Help Me Diagnose & Treat My Progressive Illness
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My name is Aster. I am a 22-year-old Accessible Education major, writer, and disability advocate. Currently, I work two jobs and try my best to live a healthy and active lifestyle. Unfortunately, though, my health is deteriorating rapidly.
When I was 14, I tried going to public school for a few months after homeschooling most of my life. Because I couldn't get as much sleep as my body needed, I started getting terrible headaches and dizzy spells. One morning, when I was getting ready for school, I passed out on my way to my room. It scared me, but I brushed it off as a one time thing. It wasn't a one time thing. Occasionally, when I stood up, I would either get really dizzy and feel like I was on a rocking boat. My vision would gray out and sometimes I would collapse. But again, because it wasn't frequent (yet), I tried not to worry about it too much and attributed it to lack of sleep or tiredness. But as time went on, it got worse.
When I was 17, I went to the doctor for joint pain that I had been having. I suspected that I was dealing with joint hypermobility, and mentioned it to my doctor. She sent me to Physical Medicine, where they tentatively diagnosed me with Ehlers-Danlos Syndrome and then referred me to a geneticist for typing, also noting that I may have some sort of genetic mosaicism because I have an usual birthmark on my arm consistent with Hypomelanosis of Ito. But when I went to see the geneticist, he was more focused on my poor mental health and completely dismissed my physical issues because I didn’t have a good grasp on what pain was at the time due to my extremely high pain tolerance, telling me to return when my symptoms got worse without doing any of the proper genetic testing.
So I lived with it. I’d quit gymnastics before the tentative diagnosis, and as time went by body started to deteriorate. It was most likely due to the lost muscle mass from gymnastics causing my already loose joints to lose the support that they once had. For the next few years, I was subject to constant injuries and sprains. From 19 to 20, I was constantly spraining my ankles doing simple things like walking, meaning that I had very little mobility that year. This caused severe nerve damage in my ankles that still persists, and even now I struggle with ankle stability. When I did physical therapy, the therapist said that I have almost no proprioception in my ankles anymore due to tissue and nerve damage, meaning that I have very little feeling in my ankles and can’t stop them from rolling. Partially due to repetitive injury, the tendons in my ankles now sublux constantly, which means that I have to be really careful when I do activities. I wear ankle braces to keep from spraining, and when I started to exercise more again the constant sprains stopped for the most part because of increased muscle mass. But my ankles aren’t the only thing on me that’s falling apart - my shoulder comes out of place whenever I move it, as well as one of the ribs near my spine. The rib is the biggest problem, as it causes me pain whenever I try to maintain good posture or walk any distance. My knee problems were actually exacerbated by physical therapy, meaning that my knee is likely to completely cease functioning if I do any sudden twisting or, occasionally, when I simply stand up.
But the joint pain and frequent injury aren’t my biggest problem at the moment. Over the past year, my dizzy spells have become more and more frequent. More often than not, standing up makes me lightheaded, and I am very prone to blackouts and falls. In the last month, I’ve fallen twice at work and multiple times at home. When I went to my doctor about it, she diagnosed me with Orthostatic Hypotension, or low blood pressure upon standing, and attributed the disorder to my meds - despite the fact that I’ve had the dizziness since 4 years before I went on medication for my mental health. The strange thing is, though, that my symptoms are much more consistent with POTS (Postural Orthostatic Tachycardia Syndrome) than OH, as my blood pressure barely drops upon standing. Instead, I get episodes of tachycardia. This is consistent with an EDS diagnosis. I also have symptoms of neuropathy in multiple places on my body, which can also be comorbid with Ehlers-Danlos.
But after all these years, I don’t have faith in my doctors anymore. My current PCP, when I told her of my tentative EDS diagnosis, told me to hope that I didn’t have it because of how terrible it can get instead of getting me answers. I had to beg for a rheumatologist referral and physical therapy, and the rheumatologist that I went to dismissed me as “probably” having “mild” EDS and diagnosed me as “overweight”, instead pressuring me to get my thyroid checked. And while I undoubtedly have thyroid issues, it doesn’t explain all of my symptoms whatsoever. Every doctor that I have gone to for help with my chronic illness has done nothing but invalidate my struggles and dismiss me, and I am desperate for answers at this point.
I found a neurologist specializing in EDS and POTS in my area, but he doesn’t take my insurance. In order to get a consultation with him, I need to pay 650 dollars. This is not including later treatment. It is incredibly important to me that I see this doctor, as he can give me the answers I am so desperate for and help me get proper treatment - including an evaluation on my heart, as EDS often has organ and tissue involvement. All proceeds for this GoFundMe go towards my first visit with this specialist, and any subsequent visits I may have. If you are able to donate, I would be eternally grateful!
When I was 14, I tried going to public school for a few months after homeschooling most of my life. Because I couldn't get as much sleep as my body needed, I started getting terrible headaches and dizzy spells. One morning, when I was getting ready for school, I passed out on my way to my room. It scared me, but I brushed it off as a one time thing. It wasn't a one time thing. Occasionally, when I stood up, I would either get really dizzy and feel like I was on a rocking boat. My vision would gray out and sometimes I would collapse. But again, because it wasn't frequent (yet), I tried not to worry about it too much and attributed it to lack of sleep or tiredness. But as time went on, it got worse.
When I was 17, I went to the doctor for joint pain that I had been having. I suspected that I was dealing with joint hypermobility, and mentioned it to my doctor. She sent me to Physical Medicine, where they tentatively diagnosed me with Ehlers-Danlos Syndrome and then referred me to a geneticist for typing, also noting that I may have some sort of genetic mosaicism because I have an usual birthmark on my arm consistent with Hypomelanosis of Ito. But when I went to see the geneticist, he was more focused on my poor mental health and completely dismissed my physical issues because I didn’t have a good grasp on what pain was at the time due to my extremely high pain tolerance, telling me to return when my symptoms got worse without doing any of the proper genetic testing.
So I lived with it. I’d quit gymnastics before the tentative diagnosis, and as time went by body started to deteriorate. It was most likely due to the lost muscle mass from gymnastics causing my already loose joints to lose the support that they once had. For the next few years, I was subject to constant injuries and sprains. From 19 to 20, I was constantly spraining my ankles doing simple things like walking, meaning that I had very little mobility that year. This caused severe nerve damage in my ankles that still persists, and even now I struggle with ankle stability. When I did physical therapy, the therapist said that I have almost no proprioception in my ankles anymore due to tissue and nerve damage, meaning that I have very little feeling in my ankles and can’t stop them from rolling. Partially due to repetitive injury, the tendons in my ankles now sublux constantly, which means that I have to be really careful when I do activities. I wear ankle braces to keep from spraining, and when I started to exercise more again the constant sprains stopped for the most part because of increased muscle mass. But my ankles aren’t the only thing on me that’s falling apart - my shoulder comes out of place whenever I move it, as well as one of the ribs near my spine. The rib is the biggest problem, as it causes me pain whenever I try to maintain good posture or walk any distance. My knee problems were actually exacerbated by physical therapy, meaning that my knee is likely to completely cease functioning if I do any sudden twisting or, occasionally, when I simply stand up.
But the joint pain and frequent injury aren’t my biggest problem at the moment. Over the past year, my dizzy spells have become more and more frequent. More often than not, standing up makes me lightheaded, and I am very prone to blackouts and falls. In the last month, I’ve fallen twice at work and multiple times at home. When I went to my doctor about it, she diagnosed me with Orthostatic Hypotension, or low blood pressure upon standing, and attributed the disorder to my meds - despite the fact that I’ve had the dizziness since 4 years before I went on medication for my mental health. The strange thing is, though, that my symptoms are much more consistent with POTS (Postural Orthostatic Tachycardia Syndrome) than OH, as my blood pressure barely drops upon standing. Instead, I get episodes of tachycardia. This is consistent with an EDS diagnosis. I also have symptoms of neuropathy in multiple places on my body, which can also be comorbid with Ehlers-Danlos.
But after all these years, I don’t have faith in my doctors anymore. My current PCP, when I told her of my tentative EDS diagnosis, told me to hope that I didn’t have it because of how terrible it can get instead of getting me answers. I had to beg for a rheumatologist referral and physical therapy, and the rheumatologist that I went to dismissed me as “probably” having “mild” EDS and diagnosed me as “overweight”, instead pressuring me to get my thyroid checked. And while I undoubtedly have thyroid issues, it doesn’t explain all of my symptoms whatsoever. Every doctor that I have gone to for help with my chronic illness has done nothing but invalidate my struggles and dismiss me, and I am desperate for answers at this point.
I found a neurologist specializing in EDS and POTS in my area, but he doesn’t take my insurance. In order to get a consultation with him, I need to pay 650 dollars. This is not including later treatment. It is incredibly important to me that I see this doctor, as he can give me the answers I am so desperate for and help me get proper treatment - including an evaluation on my heart, as EDS often has organ and tissue involvement. All proceeds for this GoFundMe go towards my first visit with this specialist, and any subsequent visits I may have. If you are able to donate, I would be eternally grateful!
Organizer
Star-Amber Pedersen-Pettway
Organizer
Phoenix, AZ
