[Image shows three spoons on a laptop keyboard. Overlaid is a clip art of torn white notebook paper with a red paper clip that reads “#This Is My EDS Part 2” with a zebra head. In the bottom left corner is the banner for Thee Crohnie Grace]
Part two of the #ThisIsMyEDS Tag is all about Diagnosis with Ehlers Danlos Syndrome since diagnosis often doesn’t occur until later in life and is under diagnosed since it can cause an array of different problems per person.
1) How Long Did Your Diagnosis Take? When and how were you ultimately diagnosed? It took 18 years before I was diagnosed. Due to having Crohn’s since I was little, many doctors blamed my problems on Crohn’s and it’s related issues. At one point my GI had put on me Celebrex because he believed I had Juvenile Rheumatoid Arthritis because it is common with Crohn’s. When the joint pain and joint related issues began to get worse they finally sent me to a Rheumatologist who told me I had Ehlers Danlos Syndrome and no arthritis, and after a genetic study it was determined I had the COL5A2 mutation that is linked with Classical Ehlers Danlos.
2) What was your emotional reaction when you were diagnosed? And Now? Honestly it was a huge relief to know it wasn’t all in my head, that I had validation, and relief to just have an answer. Of course then there was a bout of sadness over the lack of treatments and the fear of getting worse. Now I’ve just kind of accepted things and am at peace with my health overall.
3) When did you first start experiencing symptoms? When did you acknowledge them as symptoms? When I was 9 I started getting bad joint pain, around the same time I started Remicade for my Crohn’s disease, I assumed it was just a side effect of medicine and wasn’t until other problems surfaced that I began to suspect something was off.
4) Was there a specific age where your head drastically changed? If so, when was that? My junior year and that summer were when things really started causing problems. I had lost a lot of weight from a bad Crohn’s flare and the weakness and fatigue made the pain even worse, things were subluxating and dislocating more frequently and I started using a cane because I found standing and walking to be incredibly painful and I felt off balance quite frequently because I put all my weight on whichever side hurt the less.
5) What medicines, treatments, and/or devices do you typically need? Do you have access to all your needs? I have access to all my needs really. Medicine wise I rely on pain medication and lots of medication for comorbidities such as gastroparesis and POTS. I have an NJ feeding tube that keeps me nourished and keeps my medicine in my system. Mobility device wise I use a walker on a every day basis and a wheelchair as needed for longer events or things that require a more extensive amount of walking. I also use braces and KT tape on a regular basis due to joints dislocating or subluxating.
[Image shown at the top left shows my thighs and knees sitting in a car, my left leg has a brace and my right leg is taped with pink and purple KT tape. Image shown at the top right shows me sitting in a wheelchair in a cafeteria with my brother standing behind me holding his phone down for me to see while our friend stands to the left looking at his phone. Image at the bottom shows me in my dining room from the thighs up, my hands resting on the handles of my walker, I’m in white shorts and a pink shirt with some planets and text that says “Far Out”]
6) How often do you go to the hospital? How comfortable are you in medical environments? I go to the hospital for follow ups with specialists and procedures as necessary, I tend to avoid the ER unless it’s for something that can be handled locally (like my kidney stones) because all my main doctors are 4 hours away at Cincinnati so we can usually schedule a direct admit to avoid the hassle of dealing with an ER since they are not usually equipped to deal with chronic issues. Honestly in a hospital I am pretty comfortable now (I used to not be) but I still get very uncomfortable in ERs due to many ERs not knowing how to handle chronic illnesses and such.
7) What kind of resources and support do you use? My family and friends are really my main support. There’s not many sources around here so I rely on doctors and in depth research when it comes to questions and resources.
And that concludes part 2! We are nearing the end of May and there is still one segment left so stay tuned and remember that when the month ends, awareness shouldn’t stop there. Spreading awareness can help by gaining the attention of others, raising money for research which could lead to treatments or resources for EDSers everywhere.