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.
When I was first diagnosed with antiphospholipid syndrome in 2013 I was dumbfounded. Unfortunately, many of the physicians I consulted seemed to lack undertsanding how to treat me. One provider told me it wasn't a "real" syndrome accepted by mainstream doctors. Thankfully, I found the APS Foundation of America. Without ever asking for a donation I was provided with a support group, evidence-based and science based information. I learned how to advocate for myself as a patient with the support group cheering me on. A mere 5 years after diagnosis I found a skilled provider who assured me this is a real illness and showed me evidence based information for her recommended treatment plan. I shudder to think what would have happened to me had I not found this organization. Unfortunately, many members of the support group have suffered ailments leading to lifelong disability because of ill-informed providers. More awareness is needed for antiphospholipid syndrome. Medical providers are in desperate need of evidence based information. The public needs awareness of what the symptoms of this disorder are before enduring repeated miscarriages or disabling stroke. Research is desperately needed. If not for this organization I don't know what I would do.
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.