I found out I was pregnant for the first time in January 2006. My husband and I were so excited to welcome this new little person into the world. About halfway through the pregnancy, however, I had a false positive on my syphilis test. Numerous tests were done and I was told I had something called Antiphospholipid Antibody Syndrome. I was completely confused by what this diagnosis meant - and so was my OB. I was the first patient of his to have it. The first thing I did was jump online and search for this crazy-sounding syndrome. I found the APSFA website right away, and a wealth of information at my finger tips. I printed articles and brought them to my doctor. I had several pregnancy complications, but ended up with a healthy daughter, who is thriving today. When I got pregnant again in 2008, my doctor and I were far more comfortable with plans before and after conception, and, even though I did have complications again, I had a wonderful son. I truly don’t know if that would have been possible without APSFA. Now I am on Coumadin for life and the information that APSFA and its extremely knowledgeable and dedicated leader, Tina Pohlman, have given me has continued to shape my life. Facts like Coumadin is only safe choice for APS patients, and that fingerstick machines aren’t accurate for us - information I am sure has saved my life. Plus, there is a wonderful Facebook group that allows us to reach out and connect with other patients and share our experiences. APSFA is one organization I, and many others, would be lost without.
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.
I have always had a really great experience with them,
Tina is very sweet and caring and knowledgeable about APS
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.
I found APSFA, I feel, at the exact right time. Because of the President, Tina, and the other members of the support group, run by this non-profit, the lives of my pregnant daughter, my new granddaughter and my son, both diagnosed with APS, were saved. I was very worried when my 37 year old daughter became pregnant and surprised the family at Christmas already 14 weeks pregnant. She was diagnosed with APS at age 19, when she got a clot after some minor ankle surgery that allowed her to be mobile. The diagnoses was confirmed with a second test. Throughout her life she has had severe migraines and symptoms of Lupus or RA. Throughout the next 18 years and many many doctors, her tests for APS, Lupus and other Autoimmun diseases were negative. She was told, she does not have APS over and over. During this wonderful surprise of my first grandchild, I asked if she let the OB know she was diagnosed with APS. She said that no, she was told for years that she doesn’t have APS (all tests were negative). That’s when I found this wonderful non-profit and support group. When I put forth my question regarding the positive APS tests when my daughter was 19, but since that time 18 years ago, she tested negative and she is pregnant with her first child—Should I be concerned? Tina, along , with many members told me that once you have it, you have it. It doesn’t go away regardless what the tests say. I was still a little doubtful, but didn’t want to take any chances with my first grandchild or my daughter. She made an emergency appointment with her OB and they referred her see a Fetal Medicine OB Specialist. He immediately put her on Lovenox shots and repeated the exact thing I was told by the support group. He ran labs for APS, and low and behold, they were positive! (After 18 years of negative). I can’t thank this group enough for their upfront information and strong encouragement to me to make sure she gets checked immediately. I now have a 6 week old granddaughter because of the Lovenox shots and the ultrasounds that we’re done every month, then weekly. That’s only a part of why this non-profit needs to be recognized. The advice given is always scientifically sound- no heath miracle wonders or old wives tales- you get medically sound advice from what the President of ASPFA has been educated on. She doesn’t pretend to be a doctor- she will tell you what doctor you need to see and what you need to ask and what medications you need to ask about also. I had many concerns about my daughter and my son. I thought I knew about APS, but as it turns out, I basically knew nothing of value. My son had major surgery in 2010. At that time he developed his first clot. They kept coming and he too was diagnosed with APS. They inserted an IVC filter at that time - he was on a variety of medications and got clots on them all- fast forward 9 years to this year. He has clots from the blocked and opened filter to his ankles. The blood flow was nearly non-existence. Tina advised other medication he should be on. We made an appointment with hematologist and they gave him a statin, added aspirin and another new medicine. Through this process, we found a surgeon, who just last week, removed the 9 year old filter and ballooned his clots in an 11 hour surgery. I can’t thank this non-profit enough for the information I received and the questions I asked were always answered - even through the night. I highly recommend the ASPFA- they saved my children’s life by informing me of meds they should be on. This non-profit deserves recognition for the information they can give you regarding your disease, but is also a shoulder to lean on. I learn more and more everyday and couldn’t ask for better support. I highly recommend this non-profit if you are looking for good info and great support. You will find your answers here! Cindi Gall 8/5/2019
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.
Been a member for almost 17 years! Thank you Tina & APS Foundation for all you do. The information and help on this site has gotten me through some tough times.
I was diagnosed with APS in 2002. I had never heard of APS until then.
I started searching for information, the library, the internet. I began to understand what I had but found no one else with this disease.
Frustrated I searched the web looking for anyone who could understand and help me.
Finally I came across the APS web site and learned that a few more people had this disease. APS has given me the support I need to go on. It has offered information on drugs, genetic research, and treatments for APS. It has helped my family understand the disease. I don't feel alone anymore!
Thank you so much for the review. We are glad we have been able to help you. We have been trying to get more media attention. It has gotten better. We have been on Mystery Diagnosis & House. The Mystery Diagnosis Segment is available on iTunes here: http://bit.ly/ViCpw APS has been mentioned in passing by Dr. Oz. We have been sending letters to shows to get a response. We have more media picking up stories about people and running them in their local papers. Tina has done a 45 minute interview with a radio station outside of DC with the help of an employee there who also has APS. You may be interested in this page: http://www.apsfa.org/media.htm Now, it is just time and money and help from you the volunteers & clients to push the media to run a story on it. Together we all can get this in the media!
I discovered apsfa 10 years ago after I was diagnosed with APS. None of my doctors knew anything about my illness. My husband and I relied on apsfa for ALL our information on Antiphospholipid Antibody Syndrome. I now am a member of their support group on Facebook. I actually created a Facebook account solely to be a part of this group. The hard work that Tina puts in with providing all the up to date information is invaluable. Apsfa is my go to source for APS.
I first got associated with the APS Foundation last October when it’s president, Tina Marie Pohlman asked for assistance on moderating the forums maintained on Facebook. It has been quite the education, first in just learning what this devestating disease is, learning what it is to deal with it, and also spreading education and awareness. A surprising and even alarming number of physicians are barely aware of what APS is if they even know about it at all.
The foundation keeps, aquires and revises educational materials which are useful to those afflicted on everything from drugs, interactions, the very latest in research as well as keeping a listing of specialists that people can go to who know about and understand the disease.
For a lot of people, this is literally life saving. If you have APS, or suspect you have it, the APS Foundation and it’s resources are there to help.
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.
Information provided is extremely helpful, along with supportive group of folks with similar issues. Always very responsive and supportive.
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.
APS Foundation of America has been a wonderful source of current, science based information that has taught me a lot about my APS diagnosis. It has empowered me to advocate for my own care with my physicians, i.e. initiating Plaquenil use which has been beneficial in decreasing my joint pain and fatigue. Lastly, it has put me in touch with APS Friends and Family Support Group which has truly been a lifeline for me. This group has provided me with much needed support when I have had concerns with regard to my APS diagnosis, but more importantly, the group has provided an appropriate forum for me to give back by offering support to others. Knowing that other people understand or have had similar experiences has helped me to feel less isolated and raised my self-esteem. The group administrator has set and adhered to extremely high standards for this group that truly set it apart as a source of excellent information and positive support for individuals with APS and also family and friends.
Although I was diagnosed with antiphospholipid syndrome (APS) more than 10 years ago after multiple blood clots in my lungs, it wasn't until I discovered the APS Foundation of America a few months ago that I realized how little I actually knew about my condition. First and foremost this group provides valuable, up-to-date information about APS that is not anecdotal, but research based. The group forum is the first place I go with questions about symptoms and treatment to get users' personal perspectives. It can be very reassuring to learn that I am not the only one who has a particular feeling or opinion. The forum is a place to empathize and cheer on people who are in a difficult state related to their APS. It is a place for the newly diagnosed, as well as people who have been through it all. It seems there is always something new to learn. My experience with the APS Foundation of America has been nothing but positive and empowering.
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.
I have learned so much from this website. I was glad I found it as it has helped me since I was diagnosed with APS last spring. All my questions are answered in a timely manner and it’s goid to connect with others that struggle with APS. I actually feel fortunate that I do not have it as badly as others who suffer with PE, DVT, and strokes. Rating is A+
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!
I was referred to the APSFA through the Lupus Centre in Britian. I had been diagnosed for a while, and I was finally ready emotionally to learn more about the disease. APSFA has provided me with information that has made an incredible difference in my quality of life. They are the ONLY place that I feel comfortable going to for accurate information about APS. I also am very appreciative of the support forum. Being able to learn from the experiences of others with APS provides me with great strength and comfort to endure this disease with courage.
The APS Foundation of America, Inc appreciates your support. Please contact us if you ever need assistance. Thank you!
After being diagnosed in 2008 with APS, the APS foundation of America helped me get information and resources to help live with this deadly disease. I am so very thankful for APSFA , without their education and support, they have helped me so much with my quality of life ! It's amazing that connecting with others that struggle with APS, many of us feel no longer alone, but yet part of a family, providing support and love to each other ! -Sharon Jacques , Mrs Wiscasset International 2017
With the APS Foundation of America & the assistance of the staff, I would never be where I am today. For numerous years, I suffered Blood Clots, Seizures, Transient Ischemic Attacks, problems with thinking clearly, headaches/fatigue & other neurological symptoms such as dizziness & vertigo. My problem; I lacked an answer & a direction to my health issues. Unfortunately, numerous doctor doctor appointments with Specialists left me without any conclusive results, ending my journey to place a name to my ongoing issues. Stronger medication seemed like the only answer, leaving me with feelings of hopelessness. This process endangered my life & most importantly, my family. We suffered through financial issues as my health kept me from being competitive in the job market. We were losing faith until someone told me to check out this website.
What a difference maker! After a couple of calls with the Foundation's President, everything changed. We started placing names to associate my symptoms. We created a plan on how we should move forward & get the answers we need. We changed everything from local Doctors/Specialists I was currently seeing & changed them with specific Doctors/Specialists from a different location to give me a chance to find answers I have been searching for. The Foundation's President attended every doctor's appointment I had. After years of frustration & a lack of answers, it took less than 6 months to get the correct diagnosis to my ongoing health issues: APS.
The Foundation's President also helped with legal issues concerning both Long-Term Disability to Social Security Disability Insurance. With APS being a rare autoimmune disease, lawyers & judges were at a standstill how to move forward with both of my Disability cases. The Foundation's President spent numerous amount of time with APS information, how it affected me & how it would keep me from being competitive in the job market. Phone calls, e-mails, written testimony, you name it. She even served as my SSDI Representation!! In both disability cases, I was found credible & won, resulting being legally declared disabled. She was there for me from start to finish. My family will always be in debt to her.
Thank you for your review. We are glad we have been able to assist you.
Review from Guidestar
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.
Thank you for your review. We are glad we have been able to assist you.
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.
Thank you for your review. We are glad we have been able to assist you.