Episodes

Season 2, Episode 1: Ehlers-Danlos Syndrome

The Invisible Diaries

Season 2 – Episode 1

Q&A Ehlers- Danlos Syndrome. Amber and Misti are back! Please excuse our sound quality, as we JUST moved into our office space. We still need to finish perfecting our set up and we are thankful for your patience!

We of course appreciate any donations to help support our growing production.

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Q&A with Misti:

Q:What is the most misunderstood thing about having EDS?

A:  Ehlers-Danlos Syndrome is very misunderstood and very debilitating. With autonomic dysfunction, severe chronic joint pain, digestive issues, and many other symptoms, EDS can be very debilitating. It is misunderstood because many people and even healthcare providers just assume it is only about hypermobility, with the exception of vEDS. We are called zebras because in the medical field, they are trained that if they hear hooves, think horses not zebras.

 

Q: I have read there are many different types of EDS. Can you have more than one type?

A:It is said to be extraordinarily rare, according to The Ehlers-Danlos Society website. If you inherit one type of EDS from one parent and another type from the other parent, it may theoretically be possible, but not likely. Usually you have one type.

 

Q: What are the first signs pointing towards EDS and how can one focus in on those to speak with doctors and figure out a diagnosis?

A:In my opinion, the first signs start early in life, though this may vary with each patient. For me, I ALWAYS had health issues, from cardiac, digestive, chronic pain, and of course hypermobility. All throughout my 20s I kept asking doctors why I would have these health issues and if it was all linked to something. Instead of getting answers they just documented in my medical records that I had “lot of unusual symptoms.” This is why education, awareness and advocacy are so important. I image I would still be wondering today if I hadn’t started researching. A geneticist is who you need to see for a diagnosis. Criteria is more than just the Beighton Scale (hypermobility) but also family history and your health history. We have a list of resources on our website.

 

Q: What are the alternatives treatments you have used over the years and how much have they helped?

A: Because I have so many health issues, I would likely be on 15-20 different medications if I took everything that was prescribed to me. I do take 3 different heart medications, all low doses and a combo that works well for my multiple issues. For everything else, I take CBD oil. I like a low dose THC Indica for severe pain days or a 1:1 CBD:THC for regulars days.  I also use Banana Bag for dysautonomia, which helps me to require less IV infusions. I take vitamins every day to prevent anemia and build my immune system with C and D. I take a bioactive methylated folate and B12 (for MTHFR mutation). Last but certainly not least, I have a strict diet. I cannot have preservatives, dyes, artificial ingredients, processed food, aged or fermented food or high histamine food to reduce Mast Cell reactions, which include tachycardia, migraines with visual disturbances, low blood pressure, and disorientation.

 

Q: Like you, I have significant cardiac issues. What would you say to encourage younger individuals with these issues?

A:Use your frustrations and turn them into productivity. Education empowers me. Having many hobbies keeps my mind busy and occupied. Understand the stages of grief (denial, anger, depression, bargaining, and acceptance). Understand that some days are not going to be good, and that’s okay. Just try not to live in those dark places. Do as much as you can to give your body a fighting chance: nourish your body, self-care, rest, hydrate, healthy food, and movement both physically and mentally. Challenge yourself.

 

Quote: “No other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos Syndrome” – Professor Rodney Grahame

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