Published: 08/07/2019 Tags: Stories

If only people understood

I’m Spencer, I’m 16 years old, and I have hEDS.

I wanted to share my story, because I know that there isn’t a lot of visibility for the men out there with EDS.

My symptoms started when I was 6 years old. It started out as pain and instability in my ankles and knees, which was brushed off by my doctor. Unfortunately, my pain spread to my hips, shoulders, wrists, back, neck, elbows, and so on. I started having dislocations and subluxations, and I went to countless doctors searching for answers.

Meanwhile, I started having this weird symptom where I would randomly faint or collapse on the ground. I saw orthopedists, neurologists, cardiologists, rheumatologists, etc. but no one knew what was wrong with me. My symptoms continued progressing, and I was finally referred to a geneticist. She knew immediately that it was Ehlers-Danlos syndrome. This was a surprise to me, although I was familiar with EDS because my best friend since 3rd grade happened to have it. Never in a million years did I think that we would end up having the same condition.

The geneticist referred me to a new cardiologist who figured out that I have POTS. Not long after, I found out that I also had tethered cord syndrome (TCS). My best friend, who I mentioned earlier, happened to have tethered cord surgery 6 months before me, with the same surgeon. Talk about a coincidence!

Since being diagnosed with EDS, POTS, and TCS, I have been diagnosed with mast cell activation syndrome (MCAS), as well as cervical kyphosis, craniocervical instability, degenerative disc disease, asthma, Wolff-Parkinson-White syndrome (WPW), mitral valve prolapse (MVP), scoliosis, TMJ disorder, central auditory processing disorder, irritable bowel syndrome, gastric ulcers, and collagenous gastritis. I have also been diagnosed with several mental health conditions including Autism, ADHD, sensory processing disorder, and generalized anxiety disorder. I depend on catheters, AFO braces, forearm crutches, a wheelchair, a shoulder brace, a neck brace, a wrist brace, knee braces, a filtering mask to help control my MCAS reactions, two inhalers, 55+ pills per day, a shower chair, and more, to get through each day. I often get looks from people who see me using these mobility aids.

I had an endoscopy recently, which showed that I have a condition called collagenous gastritis. As it turns out, this is an extremely rare condition. I am one of only 60 confirmed cases ever to exist, which means that there is no treatment because it’s so rare. I have a multiple stomach ulcers as a result, and will be undergoing a colonoscopy soon to see if I have a related condition called collagenous colitis.

Due to my severe neck problems, I will be having a spinal fusion of C3-C5 at the end of the summer of 2019. My shoulder surgeon wants to wait until after the fusion to talk about shoulder stabilization surgery.

I am constantly surprised by new symptoms, new complications, and new diagnoses. What I personally find to be the hardest part of all of this, is the judgement I receive from people at school and in public. I get called a hypochondriac, a faker, dramatic, and deal with constant dirty looks and eye rolls. I don’t know why anyone would want to pretend to have these horrible conditions? It makes no sense to me how anyone can accuse people of that. I struggle so much day to day, but I do my absolute best to keep a smile on my face and push through it all. I do everything I can to hide my pain. I hate complaining about my medical issues, because I’m afraid of scaring people away. If only people understood that I’m not pretending to be sick; I’m pretending to be well.

Dealing with all of these conditions has inspired me to start an organization that sends care packages to others who are struggling with similar issues. I have currently sent out 70 care packages, and I plan on continuing this work for a long time. In honor of the EDS mascot, my organization is called Chronic Zebra Care Packages. Making these packages not only helps the person getting it, but it helps me to remember that I’m not alone, and it gives me a sense of purpose. Through these packages, I hope to spread joy to as many people as I can. Helping people has always been a passion of mine, and helping people who understand my struggles is especially fulfilling to me. The past 4 months I have poured my heart into this program, and seeing people’s reactions to receiving a package is a priceless moment for me. If you’d like to donate or apply, visit @chroniczebracarepackages on Instagram.

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