Meet the Founders of the APSFA

Meet the Founders of the APSFA

When we were diagnosed with #Antiphospholipid Syndrome (#APS), there wasn’t a foundation in the United States dedicated to APS. We started out with just an online support forum and a website with APS information. Our website caught the attention of the #NATT (now called The National Blood Clot Alliance) and researchers at various medical facilities across the United States. Once we began to be recognized, we decided to establish our own nonprofit organization to bring much-needed support and awareness to APS in the United States.

On June 9, 2005, our vision came to be a reality, and the APS Foundation of America, Inc. (#APSFA) was officially formed as the first non-profit organization solely dedicated to APS awareness, education, and support in the United States.

Since then, we have grown by leaps and bounds each year and have helped thousands of APS patients and their families, not only in the United States but also worldwide.

Our mission is to raise awareness of APS and other clotting disorders and to help patients, family, and friends understand this disease.  You can find our full mission and goals here.

We also have an online support forum for people who have APS, their friends, family members, and caregivers. Our support forum is private, but anyone is free to join.

This page is where APSFA founders share their stories.

Thank you for stopping by and for your support!

Tina

     I have had a long battle with Seronegative APS (SNAPS).  I was finally diagnosed in 2002.  My records formally document it as Thrombophilia with clinical features of APS. I also have Thrombophilia secondary to Lipoprotein(a), Livedo, Raynaud’s, Lupus, and now General Myasthenia Gravis with Restrictive Airway Disease.

     My problems started in grade school when I developed Fifth Disease.  After that, I started having problems with headaches and bloody noses.  In high school, I got the Epstein-Barr Virus (EBV) and have never been the same since. I had dizzy (vertigo) spells most of high school and the first part of college. My blood pressure would spike during those times.  I would have problems seeing, speaking, and walking; my body would twitch, and I would have these horrible headaches. I was told that it was anxiety and that I didn’t want to be in school.  I was an A/B student.  From 1985 to 1992, I really wasn’t feeling well at all. I got a reprieve, finished my degree in Public Health Education, and started getting involved with the US Coast Guard & Auxiliary in hopes of being accepted into Officer Candidate School. But in 2000, I started having more neurological problems and, unfortunately, was forced to stop pursuing the dream of being an Officer in the US Coast Guard.

     It started one summer night again in 2002, when I had a TIA (transient ischemic attack) with amaurosis fugax.  The ER felt it was a “complicated migraine,” as I was “too young to have these kinds of problems.” They started me on aspirin, and I stopped the birth control I was taking as I sensed there was a bigger problem at play. Two months later, I ended up in the hospital with a DVT (Deep Vein Thrombosis).  I was started on warfarin, and after much trial and error, my therapeutic range was set at 2.5-3.5 because I managed to re-clot on warfarin.  In 2006, I was placed on Plaquenil® as that was becoming a standard treatment for APS, and with the Lupus symptoms, it was a win-win situation.  I still have TIAs & feel like I am clotting despite having a therapeutic INR and being on aspirin and Plaquenil®.

     Other than the supraventricular tachycardia, the occasional run of PVCs & PACs, atrial fibrillation, and mitral valve prolapse that has gotten more pronounced over the years, it is ok.  My kidneys give me problems with decreased kidney function and protein in my urine, but it is always blamed on something else or dismissed.  I guess it isn’t bad enough in their eyes, yet.

     Getting doctors to listen to me and take me seriously has been a battle, especially in the ER. I never got a full clotting panel until I started pushing for answers.  That is when I got one positive test that was “equivocal”.  Because of this, I started a medical symptoms journal to help track my symptoms, INR, and any other patterns I noticed.

     I also started a photo journal for when my face is drooping, but I know by the time I get to the ER or call 911 and get seen, it will be better. I have shown these pictures to my neurologist, who said yes, that is a TIA that triggers migraines, specifically vertebrobasilar TIAs. The pictures I had been taking helped save me and get the diagnosis. The neurologist also felt that what I was having in high school and college were TIAs, not the panic attacks or complicated migraines they thought I was having.  I also take pictures of the various rashes that I get.  Those pictures have also helped me get on Plaquenil®.  They have helped my dermatologist recommend better treatment options. 

     I have left-sided weakness & balance issues, documented by an independent physical therapist, which are consistent with her 80+ year stroke patients.  That specific therapy session was a good day for me physically, if that says anything. Sadly, the vertebrobasilar TIAs are building up, causing hearing loss, and they suspect that this is causing an increased loss of balance.

     Over time, my Raynaud’s/Livedo has gotten worse.  My headaches & vertigo come in and go in streaks.  The neurologist, ENT, and GP had decided the vertigo was a microvascular issue many years ago.  My guess is that it is connected to the Raynaud’s/livedo, which is also microvascular.  I have problems with cystitis that seem to only come with a flare.  The urologist feels this is due to microvascular changes in my bladder from my autoimmune & clotting problems.

     Looking back, I was never healthy.  I always had some sort of cold or ear infection, and I was always taking antibiotics or Dimetapp.  I was always tired and just never could keep up with my classmates.  I was always cold and would turn all these funny shades of red, white, and purplish/blue.  At the time, we just thought I got frostbite easily.  I never really did well in the sun. I got “sun sick” very easily.  Now I wonder how long I really was sick.

     This is my “new normal”.  I have learned to keep fighting and pushing for answers and to keep listening to my intuition; my gut feelings are generally right on.  But in the end, they tell me there is nothing more they can do for me.

     Sometimes I think I can get back to normal. But every time I start getting back to my old “normal” or picking up my pace, my INR drops, or something else happens.  I just wish I could predict how I will feel later that week or the next day, etc.  Pain, vertigo & fatigue are my biggest problems, and these are recurring TIAs. APS, Lupus, and Myasthenia Gravis make it impossible to hold down a paying job and live a normal life.

     I can no longer do contract work or teach EMS classes. Speaking engagements are impossible because of memory, bulbar issues from the MG & growing health issues.  I go day by day and do some volunteering.

     My name is Heidi. I don’t have APS, but I am married to someone who does. His name is Todd. We’ve been married since 2001, but have been together since 1995. Todd has been diagnosed with APS since 2004. This is his story.
 
     I don’t know much about Todd’s health growing up. I know he had a lot of broken bones and had surgery on his eyes when he was fairly young, and a few other unrelated surgeries, but I don’t think there was anything specific to indicate that he’s had APS all his life.
 
     His problems with the “mystery illness” (this was before his dx) started in 2000. He was hospitalized for a pleural effusion, and his lymph nodes were enlarged. They did a biopsy, and he was diagnosed with CMV and sent home. He had chest pains on and off for months (years, actually), and the fluid around his heart eventually moved to being around his lungs, so he was hospitalized again in 2003 to have surgery to drain the fluid from around his lungs. He was tested for Lupus while he was in the hospital those two times, and it was negative.
 
     In 2010, the pleurisy returned and is now on the opposite lung from where it started in 2000. He is seeing a Pulmonologist again, and we will be keeping an eye on the fluid. Another drainage surgery may, unfortunately, be in his future.
 
     In July of 2004, he was hospitalized for a DVT in his calf, and after running some tests, he was diagnosed with APS. I truly believe that his health problems from 2000 onward have all been related to APS. We think that it was the CMV in 2000 that “triggered” the APS, and that he didn’t have a clotting incident until the DVT in 2004.
 
     Since his APS diagnosis, he has had numerous TIAs (11 in 2006 alone), has also been diagnosed with vertigo, Raynaud’s, Sjogren’s, possible Neuropathy, Sticky Platelet Syndrome, osteopenia in his spine, and he had a hole in his heart. In September 2005, he started having migraines as well. In 2006, he was diagnosed with 2 other clotting disorders, one inherited, and in 2009, he was diagnosed with Lupus.
 
     In April 2006, he had his first TIA in a therapeutic INR range. He had the hole in his heart patched in June 2006, and since then, his TIAs have decreased in frequency. However, his migraines have severely increased since then. In April 2010, he had a pretty bad TIA and went to the ER, where they were going to give him tPA since he actually got to the ER while he was still having symptoms. They didn’t give it to him, though, because his symptoms went away.
His new neurologist has said that one of his TIAs was probably a stroke because he has lost function on one side. Of course, none of his scans show any damage, so this will never be documented, but anyone who has had numerous TIAs knows that they DO leave damage, no matter what the scans show.
 
     In July 2006, he was scheduled for a non-APS surgery, and it was canceled due to an abnormal EKG. He was having bigeminy, PVCs, and PACs. He was connected to a 48-hour heart monitor and was put on medication for his racing heartbeat.
 
     In August 2006, he went through Rituxan chemotherapy infusions in hopes that it would help his APS symptoms. Unfortunately, we found out in October 2006 that the Rituxan did not work for Todd. In fact, it made his numbers go up. This doesn’t mean it won’t work for other people, though. It HAS worked for some people with APS and is also being used for lupus. It’s an experimental treatment, so make sure your insurance will cover it, and it’s not a “cure” or even a quick fix, so keep that in mind.
 
      In 2007, Todd was put on long-term Lovenox to try to regulate anticoagulation. His INR was all over the place and was very hard to get under control, so this option was just easier on Todd and his doctors. He was put on a medication to control his cholesterol in 2007 as well. He takes about 7 or so medications daily, which I know is really nothing compared to some APS patients. In 2009, he was taken off the Lovenox and is back on warfarin. His INR is still all over the place, and the anticoagulation clinic he goes to for his INR vein draws has a hard time keeping him therapeutic.
 
     Since his diagnosis, Todd’s been through a few sets of doctors and switched from one hospital system to another. There have been numerous reasons for the changes among doctors, and we’re very fortunate to live in an area with many doctors and hospitals to choose from. We’re pleased with his team right now, though, and hopefully we won’t have to change again for a long time.
 
     The one good thing, if you can call it a “good” thing, with Todd is that he ALWAYS tests positive for APS. He has the numbers, and they are high. So we don’t have to worry about the question of whether or not he has this disease. He does.
 
     Every time.
 
     Since his diagnosis, Todd has had and lost 3 different jobs. Employers just don’t understand that he needs time off for doctor appointments, or that he’s calling in because he is having vision issues, or that he’s having a TIA at work and needs to leave (yeah, that actually happened). So, he is now on disability. This does make things easier on us financially, but I think it’s hard for him to stay at home all day alone and hard on his mental health as well.
 
     At one point, I thought Todd felt okay overall, but he tells me he has more bad days than good ones now. He does what he can and tries not to push himself. We take things one day at a time, really, and try to keep all of the Doctor appointments straight.
 
     We are also trying to learn as much as we can about APS so that we’re prepared for the future. There is just SO much to this disease, and because it’s considered “rare”, there are so many doctors who are in the dark about things. It’s a shame that there are people who have APS and cannot get proper care. We are SO thankful that we’ve found the doctors that Todd has.
 
     We wholeheartedly believe that this disease is hereditary and will be passed on to any children we may have. My aunt on my father’s side died from Lupus, and with Todd having APS and Lupus, we believe that the risk of a baby being born with either APS or Lupus is not one that we’re willing to take. So as of right now, we’ve decided not to have any natural children. We do have other options, “adoption or foster, “ so we are planning on having a family at some point in our lives, maybe in the next couple of years or so.

Heidi & Todd