You would probably be surprised how many times people come to our site or support forum and tell us how relieved they are to finally find a group of people who are going through what they are going through, who have dealt with doctors who just don’t seem to listen or understand, and who have searched and searched online for a website with complete, accurate and cited information. This is only a small list of the hundreds of wonderful comments and testimonials that are posted by members from all over the globe in our support forum on a weekly basis.
If you like what you read on this site, join our support forum and see everything that we have to offer for yourself—it’s free!
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.
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 don’t ever feel uncomfortable posting a question because the people that are on there know what I am going thru and will not look down on me. I am grateful 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 truly grateful.
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!
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!
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.
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.
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!
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.
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.
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!
This is a great place for information and Tina, Todd and Heidi in particular need a big collective three cheers for the work they have put into the Foundation and the forum.
I am THRILLED that this forum is available! I felt so alone in this until now! You guys are wonderful!
It’s a great place to get info and chat about symptoms and questions to ask physicians so we are more informed when we do have to fight for our health.
Lots of information there and support here!
There is such a wealth of information here but even better than that there are really great people for support, who let you vent and share and many who help so much.”
This forum (and the foundation itself) will be a God-send for you like it was for me and all the others.
I have come to be grateful for and appreciate is the experience, strength and the hope that forum has provided through individual stories, help. In fact, I am suggesting that my physician check out the national APS website.
I am so glad I finally found this site. I can’t wait to be a part of this forum as I’ve found little support for dealing with APS elsewhere.
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.
When I found this foundation, my whole life started making sense. It is amazing!
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 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.
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 encouraged me to keep trying to find a doctor who understands.
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.
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.
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.
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.
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!
Thank you so much for this support foundation. I’m glad to have so many new friends who have traveled the same road as I have.
Thankful to find Support. I have been searching for some place to chat with people who actually understand what I’m saying let alone how I feel about certain things.
This is such a great group of caring people. There is more information here than you will be able to process for a while.
The relief of finally letting it out to others who understand or want to understand is incredible. Thank you SO MUCH for this.
This group has been a tremendous support to me and given me lots of information to take to docs.
Thank you all so much for the encouragement!
I’m very grateful for Tina and Heidi—I’ve been looking everywhere for some place that I could share my thoughts, frustrations, questions, etc…. with this disorder.
Boy, is there a wealth of information on this website! I have learned so much just from reading on this site.
When I found this foundation, my whole life started making sense. It is amazing!
Great place for learning, laughing and support.
Founded in 2005, the APS Foundation of America, Inc. is dedicated to fostering and facilitating joint efforts in the areas of education, public awareness, research, and patient services for Antiphospholipid Syndrome (APS) in an effective and ethical manner.
APS Foundation of America, Inc.
P. O. Box 801
LaCrosse, WI 54602-0801
[ Contact Form ]
DISCLAIMER: APS Foundation of America, Inc. website is not intended to replace standard doctor-patient visits, physical examination, and medical testing. Information given to members is only an opinion. All information should be confirmed with your personal doctor. Always seek the advice of a trained physician in person before seeking any new treatment regarding your medical diagnosis or condition. Any information received from APS Foundation of America, Inc. website is not intended to diagnose, treat, or cure. This site is for informational purposes only. Please note that we will be listing all donor or purchaser's names on the Donor page of our foundation site. If you do not want your name listed, please contact us to opt out. If you think you may have a medical emergency, call your doctor or 911 immediately.