APS Foundation of America, Inc.

I cannot imagine how many people would be suffering without this FB page. We all get a diagnosis of a disorder not even med pros have heard of and our heads are swimming with questions. It's frightening and dangerous because we have nowhere to turn and then we find this page, filled with resources and we see others like us. This page saves lives (and our sanity!). Thank you for its creation and maintenance.

I had lost hope and trust in many doctors. Then I found this foundation and all the wonderful things they do to raise awareness of this condition. I feel heard.

I joined roughly a year ago, maybe more. I've learned more from this group than the medical doctor's in my area and two specialists. The support and information is AMAZING! I love that I can share my experiences and struggles knowing this group understands!

My go to place for support and information. It’s so wonderful to be able to interact with others going through the same issues when most people have not even heard of APS. It’s hard for friends and family to understand an illness that has symptoms you can’t see. Everyone here “Gets It.” And no crazy advice and remedies allowed is a big plus!

I think God for this group every day I was so depressed and stressed out before I became a part of this group. I didn’t know what was going on with my body my mind dealing with this disease this group has helped me so much and I thank God every day for it. Thank you for being a Big part of my life and helping me get through the hardest days and nights of my life I couldn’t have done it without this group and I thank you

APS foundation is one of the only non profits in the US to successfully advocate for our disease!!

An Amazing foundation that does everything possible to help, support, advocate & raise awareness for Antiphospholipid Antibody Syndrome.

Can't thank them enough for the information they have put out for APS, so that patients are up to date on all the latest research, and know how to locate the best doctors for our care.

I was so scared when diagnosed. Took 2 years to heal from the clots. This nonprofit supplied information to me that kept me sane and equipped me to talk to doctors. My doctor learned right alongside me.

After I was diagnosed with APS in 2024, the APS Foundation of America was a literal lifesaver! I learned so much about this rare disease and received invaluable support from other members.

I have been diagnosed with APS since I was in my twenties and recently diagnosed with Lipoprotein A also. I had a heart attack and 5 stents in Dec 2023 at 49 years old. In May I had another stent put in. I joined this group because they give you a ton of great information and resources that are available to you. Amazing group.

APS Foundation provides a wealth of information regarding APS. Information can be hard to come by, yet they provide in a central area, in a concise manner. Very appreciative for all they do!

APS Foundation of America has been an indispensable source of information for me in my uncharted journey with APS. They have links to many medical documents that have been invaluable to me. Through them I have received support, and I have learned from others with APS.

Having a rare disease is isolating, especially when you live in a small town like I do. I was diagnosed in 2010 in a small rural town where none of my care providers had ever heard of the disease. I was terrified. I was the only one I knew that had it. I found the APS Foundation of America’s website and the information they provided was not only helpful to me, but also to my primary care physician. I also saw that they hosted an online support group on facebook. I joined, and quickly learned that I wasn’t alone.

After I was diagnosed I was terrified. I couldn’t find any Dr who really had knowledge about this and had the time to explain it all to me. The foundation publishes research based information and is the major source of what is going on with research and treatments.

The Facebook group really helps when you need to vent or ask a non emergency question. If there is any question as to what to do there is always someone who says go to then ER. It’s NOT medical advice but rather encouragement's from people who understand.

I was 19 when my first clot happened after giving birth. Nothing again til I was 67 in 2020… Overwhelmed after the 2 tests 12 weeks apart I tested positive. I found this group. There aren’t enough words that could rightfully explain the support, comfort , stories that show you are not alone. Tina so completely points you in the right direction along with her team. The information is all in the files but the support that comes from all that have APS is amazing.Stress is so common but having this group to turn to is lifesaving.

Important source for information about a little known disease

Diagnosed with APS after a renal infarct.
It took a while & many many drs appointments, blood tests, other tests which finally lead to diagnosis! This group has been invaluable to me! From the experiences others unfortunately have been through to questions to ask health professionals, advocacy support & so much more! I am grateful to have this information/support at my fingertips!

I am so grateful for this organization. I have gotten a great education on APS. I have learned so much more than I ever did from a doctor and I'm so grateful.

The APS group is very informative! There so much I’ve learned, questions that are answered and questions to ask your doctors. APS is an auto immune disease that’s very tricky. Anyone and everyone that have family members with APS should join this group.

I was diagnosed with APS 2 years ago. The APS Foundation has truly been a life saver. I have found life saving information here, information my doctors did not have, know about, or even think to ask me about. This is not medical advice, its just valuable information and facts that give me the ability to ask the right questions to my doctors or do more learning on my own. Just as important, this group has given me a sense of hope. Hearing about others who have lived long lives with this disease. Hearing about how others cope. Having a place to vent. Talking with others with APS, regardless of the topic really, is so very satisfying and cathartic knowing they know exactly how I feel. It's hard to explain to someone who does not have a chronic and potentially fatal disease how it feels to be truly seen and heard, but this group does just that. And I am very grateful. #DragonflyLife

I was diagnosed with APS after a presumed TIA last year. Fortunately I have a great care team and they did all the appropriate labs (and repeated them x2 12 weeks apart). I had two major surgeries, May and July of this year. I had a life threatening infection and spent 8 weeks in a universal hospital. During this time, I had 3 strokes. I found the APS Foundation of America and have learned so much! I highly recommend anyone with APS look through all of the helpful info, join their Facebook group and ask questions. You’ll be happy with all of the support you get there!

I had ITp for 11 years now . On 7/16 I got pain where I could not even sit or take breath .
My kids called 911 I end in the ER , wake up with mesh filter in my lung . Where I found out I had blood clot in my heart and a partial lung collapsed, where the next 10 days in ICU
Then I got moved. To regular care. Got out the hospital 7/31/23 I want home to recover where I was going to see my hematology team once week for blood work . On 8/10 I walked , Into a hematologist appointment and my doctor see me in tears where my legs look like there were going to pop .. she told me you are going to the ER right way
They did Ct scan where the found all my legs and my arm has blood clot
So I been in hospital since 8/10 two days ago they said we got back your intensive blood works .. we found out why is this happening to u .. they explain little about aps . I wish I know before I had 17 miscarriage . For 11 years I was thinking .. god is mad at me for the stuff I done when I was mad .. I already struggle. With depression. And anxiety and OCD and abandonment issues. For mom and dad . So my beloved husband of 13 years decided he was not happy asked for divorced. But he has no money to file for divorce cuz the last two years I am the only one was working . we’re all my finances went to the house. My savings is gone. I have no place to go now I’m waiting. Where is home when I get out of here every day . I am more depressed more scared . I’m reading more about the syndrome. I could have a heart attack when I’m in 10 years I’m 40 years old. I don’t want to die. I have a beautiful 11 year old girl. I’m a 22 year. Old son is about to graduate college I am scared me. I’m scared. I don’t know what to do

A great resource and support group for those of us with Antiphospholipid syndrome In it’s many forms. It’s the best place to start when first diagnosed, when we have a question or need to be heard, since it’s often an invisible illness and we are not heard.

When I was diagnosed with APS, the APS Foundation and the community that comes along with it helped me to understand my condition and to become comfortable with it. It has phenomenal resources that are consistent and easy to understand which have empowered me to advocate for my own health and wellbeing. It really has been my saving grace since diagnosis.

I was diagnosed with APS this spring after suffering from clots in my abdominal aorta and leg. It was a very scary time with lots of unknowns.
This group helped provide crucial information and support to me. I don't know what I would have done without this group. The factual information helped me advocate for myself in a knowledgeable manner. Hearing stories and experiences from others helped me feel more normal during a time I truly felt like my world had turned upside down.
I truly appreciate all they have done for me!!

I wouldn’t be where I am, finding help for my APS diagnosis without the site’s help.

A stellar source for accurate and timely information about antiphospholipid syndrome. Often has links to aurhoritive studies and trusted information about treatment options and sources for further information..

This non-profit was the first place that helped me understand my APS diagnosis! I was a young woman with a huge and frightening disease and no one to talk about it with.
I’m so thankful I found APS Foundation Of America! They are the most valuable resource available for this disorder. They help so many people!! I was diagnosed 14 years ago and I still learn life saving information from APS Foundation of America regularly. Without there time, research and support there would be thousands of people suffering and honestly possibly not even alive.
I’m forever grateful for this organization!

Research on APS is so important. I was diagnosed in 2006 during fertility treatments after a miscarriage in 2004. While I injected Lovanox for 2 years during fertility, I fought going on warfarin for many years. We were unable to have children.I have been barely positive at times but then needed an aortic valve replacement due to stenosis from APS last year at 51. Cleveland Clinic surgeon found a clot on my valve so I was on Eliquis and then Xarelto. I then had 2 small strokes, an ischemic and hemorrhagic a week apart in April 2023. At 52 I am now triple positive and on Warfarin. I appreciate any new research into this life-altering and emotionally tragic autoimmune disease. There are vast varying ages and stages of life impacted by this disease. Research is imperative to learn potential prevention and treatment options. I have found the APS Foundation and support groups invaluable in my experience!

If I had found APS Foundation of America sooner, it might have saved me a whole world of pain. I was diagnosed with APS after my second retinal occlusion, which left me to adjust to partial sight loss as a young mother. While my primary MD at the time did her due diligence in tracking down the reason I had had the occlusions, she didn't understand APS and neglected to explain it to me in any way. I actually spent a full year believing I had Systemic Lupus, since my MD had confused me with the term Lupus Anticoagulant. And while I was treated appropriately with warfarin, I still had no understanding of my disease. So it's no surprise that when I showed symptoms of having seizure activity, my MD dismissed me as being emotional and suffering from anxiety and panic attacks. If I had found APS Foundation of America sooner, I would have had the resources to back up the things I was feeling and fought for better care, because when I found them, I discovered my story echoed in so many other peoples' stories. They have helped me feel less alone with a disease that few people understand. Given that I live in a major city, I was actually able to meet and befriend a woman with APS. You never know how lonely you are fighting something until you discover a community that's fighting the same battle. I am enormously grateful for them.

I have loved watching seeing this organization grow and get more involved internationally.

Great little organization.

After my diagnosis of a pulmonary embolism, my doctors did several blood tests to determine the cause. Tests for APS came back positive. As I waited for the 12 weeks for the second set of blood tests to either confirm or deny this diagnosis, I started my research. There was little information out there other than it’s an autoimmune disease that causes blood to clot. I needed more. After searching more and looking at other resources I found APS Foundation of American, Inc. So much information and resources! I learned so much, that when my official diagnosis was made, I felt I needed information that made this diagnosis less scary. I was also able to create a list of questions for my doctor that was helpful for my appt. Thank you APS foundation of America!!!

I was diagnosed with APS one month after graduating college when clotting after surgery. None of the recommended medications were stopping the clots and I had a filter placed. Apparently they forgot to tell me or my parents that it had to come out. I went 9 years with both legs getting clots constantly until both legs were completely blocked. No meds were working. After awhile, I quit going to the ER-there was nothing they could do. I had every and all procedures to try to have the clots dissolved, dragged out. I was disabled and had to use electric pumps on my legs and had many wounds that required grafting when they wouldn’t heal. After specialists, 2nd and 3rd opinions, my mom was getting desperate and the doctor was talking amputation. I would have rather lost my life. Mom decided to join APSFA to see if she could find some advice to save my legs. After my mom described my history and my condition, as soon as she mentioned that I had a filter put in, Tina, the administrator, told us that it was not supposed to be permanent and that the clogged and opened filter was causing the clots. My mom told my hematologist about that and I was sent to a hospital in Philadelphia. No one there wanted to risk removing it. It took 2 years, but my mom found someone that did remove the old filter and stented and ballooned both legs from groin down. APSFA saved my life. If my mom had not joined this foundation, I would have lost both legs and at 29 years old, I would have preferred to died. I can now walk and have much less swelling. I can’t explain to you how grateful I am to APSFA. We count on this non-profit to help us through any issues that turn up. My mom is so grateful to have their support and knowledge.

Great source of information for patients, their families and medical professionals.

The APS Foundation of America nonprofit is a great help to me. I have found so much information and have learned so much. Information is shared when questions are asked. I do not feel alone in this diagnosis of APS. There is a support system from other people having the same problems. I appreciate the Foundation.

The APS foundation was the only place I found scientific based information on my condition when I was diagnosed 13 years ago. Back then, none of my local doctors knew about the disorder and it was harder then it is today to find information. I am so grateful to this organization and always refer new people to them when they are newly diagnosed.

This group shares experiences and knowledge regarding APS. Scientific studies are shared too. It’s helpful to know there are others dealing with the same disease. I am not alone with it. I join others with it through this nonprofit.

The APS Foundation has been incredibly helpful for me over the year's. As someone who was diagnosed with APS in 1988 there has not been many educational resources available and the information provided by APS Foundation is always current, relevant and quite educational. I greatly appreciate the work and effort they put into everything they do, it's quite honestly an invaluable resource.

In dealing with a rare autoimmune disease I praise APS Foundation of America for feeling supported and informed. So grateful for their work in sharing knowledgeable information including the most recent medical news concerning APS.

5. This site is a lifesaver for those diagnosed with APS. 2019 was my fateful year with DVT and multiple PEs. I did well but needed accurate and up-to-date information to be able to best take care of myself. I found it here. The support and wisdom in sharing with others and others with me have been immensely helpful. No question is ignored and folks care. A big thank you to Tina, the administrator, for all her dedication and hard work. A survivor who appreciates a fantastic resource.

Tina is always trying to find new ways to reach out to the public and APS community and raise money. I'm excited to see the new venture into helping kids with APS as well. Great to see them speaking at the international conference. Hope the community continues to support the work.

It’s been 20yrs since being diagnosed with APS. No one knew what it was . I stumbled on this group by doing my own research via the Internet.
It has made a big difference in my outlook in living with APS and gives me vital, up to date medical information. It has been an emotional support group for me. I learned I Can live a somewhat normal life, with a few tweaks, questions answered, research info made available. The APS Foundation plays a vital role in giving those of us affected by APS hope and confidence we can live with this autoimmune disease.

The APS Foundation of America offers a safe place for members to learn about APS and it’s effects by interacting with other group members. No question related to this condition is off-limits. Group members and administration are incredibly generous with their time in answering questions. I’ve been a member for 10+ years and am always learning something new. Members can be confident that information presented is scientific-based and vetted by experts.

I just joined this group and find it very informative

I have 2 children with APS. I joined almost 3 years ago. Right from the start, I received proper information, guidance and support. My son’s legs were completely blocked with an old filter and my daughter just found out she was pregnant, but since she had a few negative tests, she never told her OB-gyn. Within the first week my daughter was at an fetal medicine specialist where she was put on Lovenox and was able to have a safe pregnancy. My granddaughter is now 2 years old. I was told that the filter inside my son was adding to his problems- it should be removed. We were able to find a doctor to do that and it has changed his life completely. I unfortunately believed what their drs said and was complacent when, soon after joining the support group, they are living much better lives. The disease is a complicated messed up assortment of symptoms. I found much information to share with their doctors and I am so grateful that I was able to give them scientific information for the proper treatment, I will be forever grateful that my children are being well cared for and when unexpected things come up- I know right where to go to find answers. Tina has been my blessing- when it’s your child - to feel so helpless and uneducated- I couldn’t have done more for them but to join the APSFA and educate their doctors. I highly recommend anyone dealing with this disorder, to join this non-profit and find out what you are really dealing with!

I have found hope and a wealth of information through the APS FoA. I was diagnosed 15 years ago and have learned more in the last few weeks since finding this non-profit. Their work is priceless to me and many others living with APS. I have been alone and now have somewhere to look for advice.

So many informations. Glad I have found APS foundation as I am newly diagnosed and am currently without any medical support.

APS Foundation of America is a fantastic organization that has helped me tremendously in my journey with Antiphospholipid Syndrome. My only wish is that I found therm earlier. The medical information and knowledge Tina has and the group engagement helps all the members navigate this confusing disease.

I found this website after years of migraine headaches and two miscarriages and one preterm pregnancy resulting from preclampsia and HELLP syndrome. This organization help educate me as to what was possibly the cause of my obstetrical issue's. I was able to have a discussion with my primary doctor who ran some blood tests all related to this blood clotting disorder, sent me to a hematologist and I tested positive for APS. I was then able to get on the right treatment to prevent further clotting incidents. This organization has helped me navigate this diagnosis with my medication questions and health related issue's and brought me a community of online support of other patients that understand me. They have a Facebook page as well. I also like that they are a science based organization so I know that I get the most up to date information about APS from them.

I am proud to say I volunteer for the APSFA. It is great knowing that we are helping people get the latest science based information, usually from medical journals or our medical advisors, to give to their doctors to help them get the best possible care. Watching people starting to feel better and get better care - well, feels good.

The APSFA has literally been a lifeline for me. The knowledge I've gained has helped me to parter better with my physicians to make informed medical decisions about my care. This, along with the relationships I've developed with others in the support group, has given me a greater quality of life.

A very useful resource which offers science based information which can be of use to anybody who suffers from the disease. The APS Foundation also offers resources such as a listing of physicians who are familiar with this notoriously obscure disease, prescription help, and information on study groups conducting research.

Without this foundation, I would have never received my APS diagnosis. Words cannot express my gratitude!!

I was diagnosed five years ago with APS. Without this group, without Tina, I would not be where I am today with my health. The information, insight and honest concern from all members has made this more bearable and more understood for me. I HIGHLY recommend this group!

APS Foundation of America is a lifesaver!!! I was first diagnosed in 2006 with. APS and I was overwhelmed and confused. This nonprofit was so helpful. The president, Tina, even called to check on me a few times when I when I was extremely sick.

I believe the group had only been started a few years earlier, but the medical information they had available saved my life. The information gave me guidelines for my doctors and myself. And, most importantly I did not feel like I was dealing with this strange disease by myself. I finally had someone who understood my frustration and my symptoms.

That was in 2006 and fast forward to 2020. I website and facebook page are so important to those newly diagnosed and to us "oldtimers". I learn new facts all the time and I can also share my successes with APS with others. APS is a difficult disease because the symptoms vary from individual. But, the APS Foundation guides the discussion so that opinions can be shared by all - but supported by medical facts.

I love that we add our doctors that are great in dealing with APS that way others can seek the help they need. The Foundation has grown through the years through social media, but its roots still deal with the medical facts that APS patients need.

The APS Foundation is a true lifesaver! I'm so very thankful to have found them back in 2005. Many times over the knowledge the group has provided has saved my life. I was diagnosed in 2004 and to my delight finally found someone with very knowledgeable information on this dreaded disease that was killing me. Without the APS Foundation I would not be here today. I'm so very thankful to the Foundation for their endless hours they put into running this to help so many others.

I was diagnosed with APS in 2003. Like myself the majority of people including Doctors and nurses didn't know what it was. 17 years later,I'm still learning. I just threw a clot in my eye which cause me to be blind in my dominant eye. I am on Lovenox and follow my doctors orders to the tee. In spite of taking methotrexate and orencia; my APS titers spun out of control resulting in a clot. Being part of the APS foundation doesn't cure me but it helps me connect with people suffering the same affliction. I learn from them. I work with them to alert others what APS is. Through them we inspire others to learn, understand and assist those who deal with this dreadful autoimmune disease. I hope that one day because of APS Foundation, my children, grandchildren and great grandchildren will never suffer from APS and other autoimmune diseases.

When you are diagnosed with a syndrome that isn't really studied and therefore little information exists about it, you need a group of people who are there for you, who know exactly what you're going through. Emotionally and physically, APS is a devastating diagnosis, and so little is known about it, those with it NEED a group to share the "few and far between" bits of information. This is a fundamentally helpful group to those with APS. You can not only get information about the physical realities but also resource support. People with this diagnosis really don't even know what questions to ask so it's difficult to know how to advocate for yourself as a patient. Without this group, APS patients would be lost at sea without an oar. This group provides that oar.

I have learned a great deal about how to take care of myself as well as advocate for myself. The knowledge that I have gained through the update research has facilitated my acceptance and courage to face APS.

Excellent resource for support, education, and help for those with APS.

As an APS patient, I had few places to turn for answers, due to the, somewhat, rare occurrence of this illness. I have found a wealth of evidence-based, timely knowledge, as well as a community of support. APSFA has been an invaluable resource to myself and even some of my medical providers! Thank you for your great work on behalf of the APS community!

In 2006, I was pregnant with my first child when blood work came back with a false positive for syphilis. At first we weren’t sure what it meant, but my doctor dug into it and I was diagnosed with lupus anticoagulant. I really had no idea what was in store for me. At 27 weeks, I started heavily bleeding and thought I was going to deliver early. I started researching online and found the APS Foundation of America. Tina, who runs the organization, pointed me in the direction of articles and information on pregnancy and APS. It wasn’t an easy road, but my daughter and I both made it through. I went on to have another healthy child in 2008, armed with the facts and resources that the APSFA had provided to me. All these years later, I still rely on Tina and the APSFA to help me educate others about this serious condition. I am so grateful for them.

This is my go-to group for accurate medical information for APS. I also appreciate the support provided.

I had a lot of hesitation about joining an organization on Facebook. I don't normally do this but I am very grateful that I did. I was diagnosed with APS on April 27,2020 after having a couple of strokes and no known risk factors. I was supposed to start taking Eliquis the Friday of that week. Since I didn't get back to my doctor right away about starting it that day it was delayed to that Monday. I joined the foundation that weekend and learned the gold standard was Warfarin and not Eliquis for my condition. I was very appreciative of the research articles available to help me learn about my condition. Now they are selling great masks to educate others about what I have. I am very appreciative of the group and the support.

I began having symptoms in my teens, I was misdiagnosed with syphilis at 18, then received surgery and found Crohn disease, another auto immune disorder. I got my first triple clot down the back of my leg in my early 20s. I spent the next 15 years experiencing difficulty walking. Doctors could not give me an answer. After a minor surgical procedure I was laying in bed and I began experiencing what felt like fire in both my legs, the pain was unreal. I screamed for what seemed like ages. I finally took an 800mg ibuprofen and found soon relief. It took another 6 years for anyone to take me serious enough to do dappled studies. But when they did they found an 89%blockage in my aorta, I was placed in the hospital for bypass surgery and bi lateral, bi femoral graft. I then had 4 graft clean outs due to addition as long clotting where the graft met the artery in the groin areas of bother legs. During one procedure the doctor dropped matter into the artery and as he cleaned it out he clotted the entire artery off from toes to groin. After the leg finally died I was sent to the university of Denver hospital and had below the knee amputation, at that point the vascular department was determined to find out why a 38 year old vibrant female just lost her leg. Well....APS. not just any apse but severe. They studied the proper treatment and began the standard course for my disease. Six months later I lost the leg above the knee. I have since had 2 additional graft bypasses due to clotting off. In January of 2020 I lost the other leg above the knee due to a doctor not properly trained in apse procedures. During the opening to amputate the team could visually watch my blood clot 5 times before they took more safety measures. I have also been diagnosed with a handful of a additional auto immune disorders.

There needs to be more teaching, training, and information available for APS and other as utopia immune disorders or more and more people will loss, babies, limbs, and there lives to these disorders. There are so many people around the world with APS.....please help us and doctors, nurses, and researchers get a better practice for treatment.

Thank you,
Twila J Rich
239-478-8310
allingoodtime2014@hotmail.com
900 Aqua Isles Blvd. Lot L2
Labelle, Florida 33935

This foundation has helped me with the information needed to understand this disease. I was diagnosed in April 2020 after being admitted to the hospital with bilateral pulmonary embolism. I was scared and was doing research on APS and came across this foundation. No need to look any further because this foundation gave me all the information I needed.

My experience with the APLS foundation has been wonderful! I absolutely love my mask and it helps me feel a bit safer in this crazy time! Anytime I need advice they have been there! I was diagnosed in 2013 with antiphospholipid syndrome.

Awesome nonprofit. Always working hard for its clients. I like that that they provide science based information and medical journal information that we can share to our doctors. Our doctors seem to appreciate that more than "a nonprofit or support group said" we should try this.

They have been in the media a lot these past few 6 months which impresses me as well and donating to research. Keep up the great work.

I just wanna thank Tina Marie for everything she did, does and will do in the future.
Thanks to you and your work, I learnt more in 10 months in this group, than in 9 years of APS with doctors.
In France, you can't find answers in a non-medical language.
You allowed me to understand my illness, and myself.
Merci.

My daughter got diagnosed with APS at 10years. In my country Kenya, very few have ever heard of this disease. Its been a tough journey but being part of the support group has made my journey easier. Without the presence of specialized pediatric rheumatologist or hematologist or even APS specialist the APSFA materials shared by Tina have been my conversation piece with our daughter's pediatrician. The stories of other members have been a huge body of knowledge and a source of strength to look forward to tomorrow. I just had a PE and here is my guidance in every appointment. This group is a God sent.
Thanks to all its members and more so the president Tina who is always on hand to point us in the right way.

My name is Debra Clark, my story is not unique, it's like so many others. Which is why it is so important for us to get our stories out. I had a difficult time getting pregnant, after two c-sections was told never to have any more children that it was too risky. That was in 1983 and 84
I had my first DVT in 1987 I was a manager of a restaurant, on my feet all the, and at home with two little ones, no rest for the wicked. I had two more DVT's in 2002, while at a festival my legs cramped so bad I couldn't walk. I thought it was Charlie horses, and tried to go to sleep that night. I was woke up by bad chest pain, I have asthma and COPD so I took several treatments. After 14 hours I went to my pulmonologist and found out the blood clots moved to my lungs , I now had double Pulmonary Embolism. So they ran a test looking for Factor V Leidon gene. It came back negative. So they said it was because I smoked and I had really healthy blood, and it was really thick.
Now fast toward, I had 13 surgeries, each time I had to tell my surgeon's that I had a history of blood clots, and that I have healthy thick blood. They would put me on lovenox shots for 6 weeks and I would be done.
In 2015 I was working in two different hospitals, both in the ER's when I had what they thought was a optical migraine. Only it didn't go away, and part of my right face was numb. The nurses and doctors thought maybe I had a torn Retina, they thought I was working long hours, and slept wrong on my face, they sent me to a eye doctor. He took a look, and sent me back to the ER, he said I had a stroke.
After seeing a Neurologist, having an MRI, seeing an Hemotologist, they finally discovered I have Antiphoslipid syndrome. Now I go back to both hospitals tell them what I have, and no doctor has ever heard of it. My heart drops, I feel defeated.
I get home, I go to the internet. I look at several websites and I come across this one. I grew up in West Salem / LaCrosse area so I felt like if any one could help they could, even though I was living in Kansas at the time. I didn't know where to start, I knew I needed to file disability, because of the stroke it caused partial blindness, short-term memory loss, I stuttered, and I tried to continue working, but eventually would have to quit. If it wasn't for Tina Pohlman and APS Foundation of America Inc. I would have never made it. They helped me through the process of disability, answering questions about my disease, finding doctors, understanding tests, and having a shoulder to cry on.
Thank you for all you do , because of you , my story it's over.

Always helpful with medically accurate information my medical team will accept. Would not be alive without this organization.

APS Foundation of America is my critical link to information about APS. My local doctors are really unfamiliar with this disease and only because of a Foundation posting did I find the name of an expert in my area. I am seeing this doctor soon and hoping for real answers and relief from the symptoms. This could be a turning point in my struggle with the disease. Thank you APSFA for making this possible.

I'm 19 and was headed to college when I became sick in November 2017. I couldn't get well. My Mom kept taking me to the clinic and the ER as well as my doctor. On December 13th I began feeling bad in a different way so I called my Mom. She came and picked me up and we went to the ER. After blood test the doctor determined I was having a heart attack. Life flighted to heart hospital and 4 days and nights in CCU and it was confirmed I had APS. My Mom was struggling with the diagnosis so she started hunting and found this organization. It has given her answers and support during the past 6 months after diagnosis and several surgeries and many tests. I'm glad to know there are others that can help answer questions and share experiences though our lives. It helps everyone to have similar people sharing similar experiences.

I was diagnosed with APS after suffering a cerebellar stroke in October, 2016 and a DVT (deep-vein thrombosis) behind my right knee six weeks later. Looking back, APS may have played a role in a "widow-maker" heart attack in 2014 that by rights should have killed me and very nearly did. After the stent was placed and the clot removed, restoring blood flow, I experienced reperfusion ventricular fibrillation (V-Fib) when not all of my heart muscle wanted to get in synch with the rest. It took FOUR attempts at cardioversion before things settled into rhythm.

I found out later that the hospital contacted my wife, who was en route, and told her that my status was "extremely critical."

I'm a research-oriented type, so I read extensively on this condition once I was diagnosed. But the medical community doesn't yet recognize all of the incredible array of symptoms that this disease can produce. That's why I'm so grateful for APFSA and the resources it's put together, as well as its APS Friends & Family Facebook page.

Tina Pohlman has created a safe space for people with APS to vent, to seek answers, and to provide coping tips. Since APS is a rare disease, having the chance to hear from others who are experiencing the bewildering symptoms of APS is both a lifeline and a reassurance that we are not alone in our struggles.

Thank you, Tina and the Foundation

To whom it may concern, I just don't know where I would be without this. They helped me so much with all the new info I was searching for when my youngest daughter became ill with APS. The support & information is beyond words. I tell everyone about the great experience I have had and continue to receive. I hope together we can raise awareness and support for patients as well as family. Such a great non profit. Thank you.

I was diagnosed in 2015 with APS and thank God I found APS organization! Tina and the researchers have been a wealth of information! many doctors to don’t have the knowledge base required when a patient is diagnosed and I am greatful for this organization pointing me in the right direction! very useful resource and love they support all the research being done!

Fantastic organization! I know when I go there, I'll get up-to-date, sound information. No woo woo info here!
The forum is a godsend. It's nice to be able to share my ups & downs with people who truly understand.

The information from this foundation has helped my life tremendously. I dont know where I would be in life right now if I did not have the support from the APS Foundation of America

The APSFA literally saved my life. When I was first diagnosed with antiphospholipid syndrome over 15 years ago, I was lost and scared. I'd had another DVT (blood clot in my leg) and had been diagnosed with this very scary sounding disease. I had doctors that were unsure of how to treat me and was using a home machine to test my blood that wasn't working right, and I didn't know why. I somehow found my way to the APSFA, and they gave me the answers that I needed. The APSFA not only armed me with detailed medical information that I needed about my relatively unknown condition, but also warned me that getting blood draws at the lab was the only accurate way for me to monitor my condition. I believe that this information saved my life as I would've most likely died if I'd continued using that machine. But that was just the beginning. Over the past 15 years, the APSFA gave me reassurance that I was not alone and provided me with unconditional emotional support. With the APSFA by my side, I've survived five miscarriages and multiple clotting events. I can say unequivocally that this organization will be there to support you when you need it the most. And it starts at the top...Tina Pohlman is one of the most amazing people I've ever had the privilege to know. She is a true survivor, and her tireless passion for this organization, often in spite of and at risk to her own health, is inspirational. I feel very fortunate to have had the APSFA in my life for so long.

After being diagnosed with APS syndrome aka Hughes Syndrome almost 20 years, I found myself trying to do research and learn all that I could about an autoimmune disorder that I'd never heard of. Whenever I would tell someone that I had APS syndrome, they would ask me what is was. I stumbled across The APS Foundation while online one day, and I got involved with the online site. The foundation has been a great help in providing me with answers to alot of my questions. I also have got a great network of other APS syndrome sufferers who share what it is like to live with APS. Being able to network with these individuals provides a great support system for all parties involved. I'm glad to see that the public and physicians are becoming more aware of what APS syndrome is through the Foundation. Hopefully, that will continue to increase as more people are diagnosed all the time. These Foundation has truly been great for me.

So happy I found this organization. They've been the support I need while going through major health trials! Great organization!!

I was diagnosed with APS in 2004. I think I found the website for this organization a year or so later. The support and information provided was invaluable at the time because there was so little out there.

This place gave me tons of info and stories when i needed it. Its a great resource and help.

Wonderful people raising awareness of APS. I don't know where I would be had I not found APSFA. So much concise information on APS all in one spot offering amazing support for APS sufferers and their friends and families. Truly amazing group! If I could give 10 stars I would.

I have lupus and APS. I enjoy reading posts on this page cause this group understands what I'm feeling and how frustrating it is to go to the doctor and be ignored. More education is needed for the public and the medical profession.

I have felt so alone. Was having problems finding Doctors. Since joining this foundation I feel part of a family that understands what I'm going through and I'm not alone anymore. So few Doctors know about APS and even fewer have any idea of what to do. Having others to share with has taken some of the fear away and incouraged me to keep trying to find a doctor who understands.

First diagnosed in 2004 with APS. The foundation was the first support group I found. The information and support has been incredible and has saved my life many times. If it weren't for the knowledge shared here I don't believe I would have lived this long. I'm so very grateful that the APS Foundation exists and helps so many of us with support and knowledge.

When I am confused about what is happening to my body because of new and/or worsened symptoms for APS or other possible autoimmune disorders, this is where I go for support and/or clarification. You can count on current and accurate information as only verified and cited information is provided. Also, the forum/Facebook page moderated by Tina Pohlman is just such a great source of support as well. Highly recommend both sites.

APSFA has literally been a life saver! When I was first diagnosed about 15 years ago, I stumbled across the site in my quest for information. They are the only site that I have found that has comprehensive knowledge backed up with studies on not only APS but also other common autoimmune conditions. I also joined their support forum at that time and have made wonderful, knowledgeable, life-long allies and friends. The Facebook group had continued the tradition of support and sharing of information. I would definitely recommend this site to anyone with APS!

APSFA has really helped me learn my disease. Many doctors that I have spoken with since I learned about my disorder know little-to-nothing of my condition, and many aren't willing to work with clients who have APS. Their Facebook page and Website have helped me understand my condition immensely. I'm glad to see that they work hard to find grants that will aid the study and treatment of APS and help to give information to the public, doctors, and patients. They regularly connect with people who have APS, and give far more information than many other sites who also focus on the disease, and have financial transparency along with a 501c3(a must for any organization who wants to raise awareness for a disorder like this). When I found out that I have APS, they were the website that gave me the information that I needed to get a handle on what I was reading. Thanks to APSFA, I now have a better understanding of APS and what I should look at in new doctors.

I was diagnosed w/APS 10 years ago. I've had multiple DVT's and PE. I've never been to a doctor that seemed interested in answering my questions and most of the info I have came from my own research. This disease is scary and I've never had anyone to discuss my fears or answer my questions until I found this page. For years I've felt like I was all alone in this as family and friends simply do not understand how devastating APS really is. Now I have a place to go for info and support. I'm suddenly not alone anymore.

I was diagnosed with APS 2 yrs ago and am so lucky I found this organization on the web. The amount of information available is amazing and it's always growing. Doctors should be required to visit the website to better educate themselves! Then they would learn that APS has many symptoms. APS Foundation of America Inc also helps ease my frustrations by reading stories shared by other people with this disease. I'm so thankful for this foundation and all the amazing people that make it possible.

About 2 years ago I was diagnosed with APS. Like others I had no idea what APS was . As I started to research what this illness that was I came across the APS foundation. Which truly has been a big help to me.Their website has great resources such as doctors that treat APS , articles and a newsletter with has lots of tips and stories of people that have APS. I'm so thankful for this foundation hearing some many stories about other people with APS has truly help me with dealing with APS.

I was diagnosed with APS October 2010. When I first learned of my diagnosis I was scared and confused. The first thing that I did when I got home was throw myself into the internet to learn everything I could about APS. I came across APS foundation of America, and I have to say it was a sigh a relief. There is so much helpful information and it was written in a way that whoever was reading could understand it. I love the fact that they have a facebook, and on that facebook are so many people that have APS and can relate. I dont ever feel uncomfortable posting a quetstion because the people that are on there know what I am going thru and will not look down on me. I am greatful for a organization, it helps me in many ways understand my diagnosis and my family can go onto the site and get more of a insight of what I am going thru. In many ways it is my outlet when I am going thru my "down days". I am truely greatful.

I was diagnosed with APS in 2005. There were only a handful of physicians who knew about, let alone understood, the full impact this has on my life, and will have on my life, until my last day. Suffering with this not-well-known disease was difficult. I felt alone. I am thankful to have found the APS Foundation to have the support and resources to help me, my family, and even my employer, help understand this debilitating, silent, invisible disease.
As a patient, the support and understanding has helped my family and me better understand and cope with the sudden limitations placed on my life. The Foundation members are thoughtful, compassionate, educated, up-to-date, and have their "finger on the pulse," of any/all new updates we, as sufferers of this disease, need to know. Additionally, the APS Foundation is an excellent resource for any aspect of APS -- the patient or physician both can utilize. I am thankful for the foundation and its hard work and dedication to the sufferers and the cause.

When my husband found out he had APS there was not a lot of information about it on the web. The APS foundation has not only been a great source of information, but because it's such a rare disease it's helped us not feel so alone.

I love being a part of this group. The support and information I have needed is always available through this group. The information is life saving for those who have to live with Anitphospholipid Antibody Syndrome.

I was diagnosed with this rare blood disorder a little over 20 years ago. Because it is rare, it is difficult to easily find reliable information or to meet people who share this same diagnosis. Through this organization's online community, I have learned more about my illness and gained friends that are able to offer support/advice when I am having challenges.

The APSFA has been a great support to me and my family. I have learned more from their website, support forum and information packet they sent from me. I have found the staff to be super friendly and really caring about me. They have helped me a lot. I love that they send their newsletter out by email for free. Those are always informative and many of their medical advisers write in them everytime. Their articles are cited and my doctors have used the references to help me get better care. Words can not explain how much they have helped me. Thank you!

I was just recently diagnosed with APS and like many people before me, came to the internet looking for and finding the answers to many of my questions at this web site. If it wasn't for all the many wonderful people whom were there to chat with, who understood and know the pain and confusion that accompanies this disease,I am not sure what I would have done. So I thank you APS Foundation for being there for me.

I was diagnosed 3 yrs ago with this disease due to dvts in both my legs and a clot in my arm. My docs took so much blood from me over a week doing test after test and found that I have APS. I didn't understand the severity of what I have. My docs didn't know that much about it. So i had to result to the internet to find out more about this disease. They were one first website and went to it. I found so much information and was able to get more answers that I was able to teach my docs something. I took in articles in so they could learn how to treat me. I am not a Leper and thats how the docs made me feel. I also learned not to have fingerstick blood test for the blood thinner i was on. And to seek a rheumi to get more answers. For the people who run this organization I give them alot of credit for giving info that saved my life. If it wern't for them I would probably be dead and buried right now. Thankyou Aps foundation of America. Keep up the good work and keep it going and save more people like me.

In August of 2009 I had the worst headache I had ever experienced in my life. I'm not a napper, I don't lay down unless I feel awful. Over the weekend of the headache, I was in bed most of the time. I finally went to the emergency room where they discovered that I had blood on the brain. Further tests revealed that I had a blood clot in the vein that drains blood from the brain. In February of 2010 I was diagnosed with Antiphospholipid Antibody syndrome. I didn't know anything about the syndrome so I went to the Internet to find answers. I found the APSFA and their support forum. I am thankful because this disorder is such a mystery and the APSFA had many answers that my doctors did not. I have found the APSFA very helpful and the support forum great because you can share your experiences with others who have the same symptoms and problems.

I was so relieved when I found the APSFA after suffering from numerous blood clots and finally getting my diagnosis of APS. My doctor didn’t explain the disease, just handed me a prescription for Coumadin and said I would be on this medicine for the rest of my life, and I would need to be careful because it was a powerful drug with potentially deadly side effects. I was so scared. I went home that night and started searching the web and read everything I could get my hands on. The APSFA is the one and only foundation that provided me with what I desperately needed at that point in my life. Their web site had an easy to understand glossary and description of APS. I found professional looking brochures that I printed and gave to my family. I read newsletters that had stories of other APS patients that I could relate to. I also found a support forum on their web site. There I met the most wonderful, caring, understanding people who helped me cope with the devastating news of my recent diagnosis of APS. APSFA has also provided cited medical information to several of my doctors who have used this information to improve their treatment of my condition. APSFA has promoted awareness of this blood disorder which has helped so many patients get a quicker, more accurate diagnosis. I would be happy to share my experiences with the APSFA with anyone that wants to hear more.

When I tested positive for the antiphospholipid antibodies a couple years ago, I had no idea what I was dealing with. My "team" has included an excellent rheumatologist and the APS Foundation of America. Because of the honest information I received there, I learned questions to ask my rheumatologist, the most current research on treatments and, maybe for me, hope that I could go on and lead a normal life. Yes, it would take monitoring and medication, but I could work and still be me. Since then, I frequent the site often and have tried to be an encouragement to others as they have been and continue to be to me. I would recommend this foundation to anyone dealing with aps.

The APSFA has helped me in so many ways. I get so much positive hopeful energy from everyone on the site and I am grateful that the APSFA is there. There is not a lot of good information out there to help people with APS but the APSFA is full of much needed information and I use the site daily. In addition I use the forum on the site to get support, we do a weekly check in and I have found friends with APS so I no longer need to suffer with APS alone. There is no charitable organization more deserving than the APSFA that I know of. I have a lot of medical issues other than APS and I can even get links from the staff at the APSFA to find out about those issues. I am hopeful that the APSFA will win this money as I need them as do many others who use the site. It is important to note that my doctor even uses the site to get information that he can't find elswhere. Thank YOU for taking the time to read my review and please consider the APSFA to recieve this award. Make it a great day, Peace, God Bless

APSFA is an amazing non-profit. They have successfully created an online support forum that is a life saver to people diagnosed with antiphospholipid syndrome or those who have symptoms and are still trying to get a diagnosis. they are also a central clearing house for research and medical information on APS and related conditions. They do great work!

APS foundation of America has organized lots of information that is so helpful to those of us suffering from APS. I had a stroke 13 years ago, but was not diagnosed until 2000. Hopefully, this organization will bring more attention to APS so new and better treatments will become available.

Hi, I have lived with APS for over 26 years now. In 83 I had clots go to both lungs. I was carry a baby at the time (6 months). The babies heart beat was 50 bpm and mine was 30. This was before Hughs syndrom, sticky blood or APS was even known. I have had clots to the lungs, miscarriage, and the latest was dvts. I had so many medical problems and when I had the dvts, over 9 years ago is when I was told that I had APS. I went to a thrombosis research doctor and that is how I found out. He told me that I have had this for most of my life. It is a hard disease to diagnose. I have found out that even within the last 9 years, there is still many medical personal that really knows nothing about it. I think also that people that has it and is not able to work that it would be easier to get disability. The SS disability personal does not understand it either. My doctor does not want me to work. I wish that I could help with getting the word out about this disease so that it would help others and myself. I love the APS Foundation of America. My Daughter did a research paper for one of her collage classes and received an A+. I love reading about others and knowing that I am not the only one going through this. Not only is it hard on the person with APS but also the families. I pray for all that goes through this.

I have been diagnosed with APS after 4 strokes and one spleen infarc. (between November 09 and April 10). I was on comaudin for a few months and still had strokes. The hemotologist finally deemed me a comaudin failure and I now inject Lovenox 100 mg twice a day. That is a life long prescription. I got home from my last hospital visit 5 weeks ago and found the APS organization. I am so grateful for having this information available to me and to help others by sharing my story. I know now that I have had a few strokes in my lifetime but I was always treated for anxiety or migraines. Thank God I now know the symptoms of a stroke and immediately get help. They listen to me now. The doctors and nurses had never heard of APS so we all learned together. Thank God for this website!!

This foundation has been a Godsend to me. I found it by chance surfing the internet looking up information on this crazy disease I have. The members of the foundation work tirelessly to provide and maintain the forum. The foundation has provided me with information to educate myself with and the support of good friends suffering the same illness as myself. They have been there for me during one of the darkest times in my life and have cheered me on on the happiest days as well. I would be lost without all of there hard work and dedication.

I've received much information from the APS Foundation since my strokes. I am not able to tell you more right now, but they are fabulous at what they do...

After a major stroke in 2008 the doctors could find no reason for me to have a stroke. I was 48 and in moderate to good health. After much perserverance of my neurologist and the hemotologist he brought in and a battery of tests. They took blood until i thought i'd had no more to take. I was finally diagnosed with Antiphospholipid syndrome. After 1 month in the hospital and rehab. With several months of outpatient rehab to go my search to find out about APS with the help of my family began. that is when i found APS Foundation of America. They provided me with the information in needed and info I could share with my medical team to understand this under diagnosed disease. After reading more and more about it I feel I may have had this much longer than suspected. APSFA has been very helpful to me my doctors and family in learning about this disease. Spreading the word and getting people the help and information they need to find out about this disease and learn how to live with it. Christine White

I found out in 2007 that I had APS after clotting during a surgery and subsequently getting two pulmonary embolisms. Nobody seemed to know ANYTHING about this disease and I had to do the research myself. APSFA provided great information, reading recommendations, support materials to give to my doctors and have a wonderful patient forum. At one point, my doctors were tracking my PT/INR with a finger stick machine and the APSFA was where I found out that finger stick machines don't work for APS patients! They can give an incorrect reading. They pointed me to the manufacturer materials that stated the machines were not for APS patients. Now my doctors always check my levels with a blood draw to insure a truer measure. This could be the difference between health and another blood clot.

In 2002, our 14-year-old daughter was found to have APS during pre-operation labwork. She had some unusual symptoms but we never knew what they were from. After her diagnosis, we were able to find so much helpful information from the APS Foundation of America. This organization is an important resource for a condition that is under recognized and poorly understood in much of the medical community. After our daughter's death in 2007, we asked that donations be made to the APS Foundation of America so that they may continue their efforts. Thanks for your help and support!

I have been a part of APS for a little under a year. They have provided numerous resources to myself and my father as to his condition. I have been befriended by many and have used their resources to give my father a better quality of life.

I was diagnosed with APS in 2008. I had no clue what it was or how to handle it. This foundation gave me answers and support. I am so thankful that I was able to find this wonderful support system.

After losing a son at 18 weeks gestation and being told I had APS, I was very scared of what it all meant. One doctor told me I should never try to have children and another told me I didn't know what I had because they couldn't find the APS diagnosis in their medical database. I found this website while doing my own research and was so glad that I did. I was able to talk to other people who had gone through similar experiences as well a those who have been affected by APS much more than I have. I have gotten a much better understanding of symptoms and what to watch for in the future. Through the help and information on this site, I was able to have a healthy and safe pregnancy.

My story starts when I was a teenager, I woke up in the middle of the night with screams of pain. My head felt like it was going to explode, When My parents placed a cold washcloth on my forward I was finally able to close my Eyes. As I layed there, There were what seemed like fireworks going off in my head. I believe this was what I believe to be my 1st TIA. At this time my mother took me to the Doctor, There were no answers, only questions. I showed up to have "some kind o venereal disease. I was only 13 at the time, very much a Virgin. My parents did not know what to think. My mother at this time was having one of the first Hip Replacements at USC. I believe she also had APS, first diagnosed as childhood RA. She had been on prednisone for most of her life. She had been diagnosed with diverticulosis. I believe this was due to her Lupus and the combination of the cortisone. I am now going to flash forward to my 1st born son. For some reason I started labor at 7 months. He was born at 5.5 pounds, Incredibly healthy yet Jaundice. At that time no red flags went up to any of my Doctors. I have been a dance Educator, and a certified Aerobic step Instructor. At age 47 I had my 1st Stroke, and no answers to the reason why. Finally my neurologist sent me to UCSF where they finally diagnosed with APS. This is when I became aquainted APS Foundation. I am so glad they were there. I live in far Northern California, Arcata CA. There is no information locally about this disease. Because of APS & Facebook I have been able to educate my friends and Family about this Disease. I don't know what I would have done if they were'nt a strong Non-Profit. God Bless thier staff & doctor's!

I totally support your charity even though I do not have APS. I feel you are doing a wonderful and excellent job educating the general public and helping people. Take Care, Iris Springflower

When my husband was diagnosed with Antiphospholipid Antibody Syndrome, we felt helpless and had no where to turn in the USA for support. Most APS patients feel that way when first diagnosed...alone, helpless, confused, scared. The APSFA helps them realize they are not alone - there are others out there who live with this disease, the same symptoms and the same struggles with doctors. The APSFA strives to provide the most up to date and cited information for APS patients. We spend countless hours working behind the scenes so that the website is accurate and the support group is a save haven for APS patients. I have made many good friends through the APSFA and the support forum and have found comfort in the fact that we are not alone, others feel the same way and when you're diagnosed with an autoimmune disease like APS, that's important.

I have been diagnosed with APS since 2003, The volunteers have championed the need for a US chapter for APS until now we have gleened information and support from the UK. Now we can really start pushing for the Medical Community in the US to become much better educated on this disease. Thank you all for your unwavering dedication.