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
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.
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.