Life with Ehlers Danlos Syndrome: I haven’t posted about my health for a while because I didn’t have any news to update. I am still frequently sick, though I have longer lengths of time that I am well enough to do various activities. I get headaches nearly every day, nausea, dizziness, body pain, fatigue and brain fog. Lots of fun, right? It is strange to be so unwell, yet to look perfectly healthy. It is also amazing what you can get used to.
So, the news is that I have a rare genetic disorder called Ehlers Danlos Syndrome (type: hyper mobile). It is incurable, but you can help minimize its symptoms. My doctor explained that the Ehlers Danlos Syndrome is making it harder for my brain to heal from the post concussion syndrome. I also might have POTS and MCAS, both also making it harder for my post concussion syndrome to heal (those two things aren’t diagnosed though- I am going to be tested for them).
It is very, very hard to find a doctor knowledgeable in EDS- my new doctor is not only able to diagnose and treat EDS, but he also specializes in brain injuries. What a blessing! He just opened his practice a couple of weeks ago- it is less than ten minutes away from our house. It felt like a miracle. He is going to work out exercise plans for me that will help the EDS and post concussion syndrome.
So that is it! We keep trooping on. Life with Ehlers Danlos Syndrome is difficult. Interestingly, I can walk for miles, but cleaning the house makes me throw up, haha! I’ve learned so much throughout this experience which now has been going on for over a year and a half. I’ve had to be ok with asking for help and pacing myself. I am very optimistic about the future because I can now finally get the proper treatment for my very complicated problems.
Other life updates: Living with a brain injury
