Day 22: A Resource That Helped – The Ehlers-Danlos, Marfan and Related CTDs New England/MA Support Group and the tireless work of Jon Rodis have helped me learn about my condition, connect with others, locate providers, and find out about the latest research in connective tissue disorders.
Day 23: What Earlier Diagnosis Could Change – One could start wearing braces, using kinesio tape and mobility devices earlier to decrease the amount of subluxations, thus decreasing the amount of injuries. Also, accommodations could be requested in school and work sooner.
Day 24: Something Iāve Unlearned. Living with EDS often means unlearning internalized pressure, guilt, or unrealistic expectations. What have you unlearned?
Iām still working on unlearning stuff. I feel guilty every time I cancel plans on someone. I want to do things, but Iām not always physically able. I feel internalized pressure to have accomplished something every day. Iām getting a little better at unrealistic expectations though! As Iāve mentioned in previous days, Iām getting better at doing stuff every other day because I just donāt have the energy for events two days in a row.
Day 25: Gratitude Moment – Share one thing, big or small, that youāre thankful for today: Iām thankful for so many things! The first item that popped into my head is the byACRE rollator that Sarah won for me! Itās light enough that I can lift it out of my trunk and itās a head turner! I get compliments on it wherever I go.
Iām also thankful for Vyepti infusions, as my number of migraine days have gone from 20-something a month to 7 or so a month. Also, Fasenra injections have eased my eosinophilic asthma tremendously. And thereās my stockpile of Reyvow abortive migraine medication. The manufacturer ceased production worldwide in November, but Iāve been able to get it filled each month at a secret location. (They expire in 2028, so I hope another migraine medicine comes along that helps me!)
My AP British Literature teacher would tell me that people arenāt things, but Iām so thankful to my husband, friends, and family who have supported me. And of course, my fur babies Griffin (RIP), Candy, and Ada. If it wasnāt for that Fasenra, I never wouldāve known the love for our cats. Candy and Ada are on the record as emotional support animals! And Ada is even good at alerting Jon when Iām experiencing sleep paralysis episodes.
And a laundry list of my favorite things that help me cope: music, libraries, reading, movies, doodling, coffee, TV, travel, video games, living vicariously through Erin Fitzgeraldās vlog The Erin Space, and watching baseball.
Day 26: Coordinated Care In Action – What would truly coordinated, collaborative care look like in your life?
Once upon a time, I had a nurse case manager at my hospital and she did an admiral job of attempting to coordinate care. She had a pharmacist run a check on all of my meds to see if there were any negative interactions. Then she was laid off.
I just started working with a nurse case manager from my insurance company. Sheās been really sweet so far and has been helping me to try and locate a physical therapist who has Ehlers-Danlos experience. Iām going to ask if she can have a pharmacist check my meds, as itās been a while.
I would love to see truly collaborative care. I feel like many of my problems stem from my vagus nerve/hEDS, so it would be swell if my all or most of my medical providers could meet together. Or at least email each other! I am lucky to have a fantastic PCP whoās excellent at referring me to appropriate doctors, but sheās nearing retirement age. š±
Day 27: Growth Iām Proud Of – What personal growth have you experienced over the years?
I used to feel self-conscious about using mobility devices and braces, but Iāve grown to realize how helpful they really are. Iām able to do so much more when I use my rollator vs. my cane. Soon, Iāll be transitioning to a power wheelchair and Iām looking forward to more freedom (though Iām still not gonna be a fan of cobblestones!).
Day 28: What Progress Would Feel Like – Imagine progress over the next 10 years. What would that feel like for you or the community?
I can hope that some sort of biologic will come along to treat EDS. Right now, the part that is most difficult for me to tolerate is the gastroparesis. It has a limited diet (low-fiber/low residue), I have to eat small, frequent meals, I have to eat loads of protein, I have almost constant nausea, no appetite, and I vomit almost every day. I honestly would love to eat a salad and not get sick! That would be progress for me. (Of course, that would also mean treatment for oral allergy syndrome and MCAS-letās hope that happens, too!).
Day 29: What Awareness Means in My Country – How does awareness show up where you live? What changes would you like to see?
I feel like folks donāt really know what Ehlers-Danlos syndrome is. I didnāt know what it was until one of my medical providers brought it up in light of my hypermobility over ten years ago.
I would love to see more knowledge and experience among my medical providers first, especially physical therapists. Then the general public. I think people who have heard of EDS know about it because of celebrities like Lena Dunham, Sia, and Jameela Jamil have it.
I think that campaigns like this one and EDS Awareness month do help bring attention to EDS and hypermobility. I also hope that this blog helps a little bit! I just need to write my autobiography!
Day 30: Why Research Matters –
Iād greatly appreciate continued research for better management of hEDS and an improved quality of life. Today, I have so much Iād like to do, but my body is knackered because I had seven medical appointments in four days. It would be so exciting if there was more research into something like the vagus nerve, which affects so many issues I face.
Day 31: Moving Forward Together – What gives you hope as we continue building awareness, research, and education for the next decade?
Itās been over a decade since I was diagnosed. In that time, Iāve gone from having to explain what Ehlers-Danlos syndrome is to medical providers to the majority of them at least hearing of it before. The new generation of medical providers already seem more knowledgeable and often explain EDS complications to their elders.
Iām hopeful that with more research and education, there will be better treatments for EDS and its comorbidities. Next month, Iāll be trying a new treatment: lidocaine infusions for pain from hEDS and fibromyalgia. It gives me hope that pain management doctors are trying treatments like that. Breakthroughs like Fasenra (for asthma) and Vyepti (for migraine) also lead me to believe that there could be hope for EDS.
As for awareness, Iām pretty psyched that there are comic book superheroes with EDS! Marvel has Sun-Spider and DC has Starfire!
