When An EDSer Sees an Ehlers Danlos Informed Specialist – Aviva Seigler

Having an uncommonly diagnosed condition can often lead to seeing providers that have not heard of your condition that impacts your life. This has happened over and over again. This happens so often, when you see a provider that knows a lot about the condition, you are genuinely surprised.

In October, I saw my primary. She is worth her weight in gold. I got lucky with her. She had openings for new patients and she is quite knowledgeable about EDS.

Anyway, I saw her in October over sharp hand pain. My normal pain is not sharp and that’s usually a clue that something is going on. It hurts to sew, write, color, draw and basically anything to do with my hands. She sent me for an X-ray. We know that it wouldn’t show anything but that is to appease the insurance.

She also referred me to a hand specialist. The wait to see him was a long time. I had been dealing with this pain for a while so I got the soonest appointment I could. This was a few days ago, in February.

When I was called back by the nurse, he asked me a few questions. I asked him if he heard of Ehlers Danlos Syndrome. He had told me that his son has it and he can do pretty interesting things. I told him how I used to irritate my mother by biting my own toe nails and did not realize until about 5 years ago that not everyone can do that. He laughed a little. He asked me if I hurt myself that I knew of. I said I have EDS so who the hell knows. He laughed and said that’s what he thought I would say.

The nurse took basic information and said the provider would be in. This was a physicians assistant. The PA came in and introduced himself.

He asked if the X-ray that was taken in October was the soonest one and I said yes. He told me he was looking at the spaces between the bones and that would tell him if I had arthritis and I did not.

He then asked where it hurt and I showed him. He manipulated my hand in numerous different ways. He asked me questions I did not even think were relevant, but they were. He then asked me if I ever dislocated that finger before and I told him no, which was the truth.

He asked if I ever had swelling. I did have swelling on and off between the knuckle on the back of my hand. I said between my pointer and middle finger.

He then said my X-ray looked good but he knew exactly what was going on. He drew a diagram of the bone structure of the he and showed me the muscles and the tendon there. The tendon is torn and the muscles are strained.

He told me that a lot of primaries do not have the training to diagnose an injury like that because it is specialized. That makes sense because there are many little parts to the hand.

He gave me buddy straps to keep the finger buddy taped so I don’t spread my fingers apart and that what caused the issue. he also said that he is almost positive that I did it at work but it cannot be proven. I have Medicaid so it will be covered. That is no big deal.

He also said if it does not get better, the next step is hand therapy, which is he has in his office. We will see!

These buddy straps are not made well so I made some out of fabric and Velcro. Since i have to have them for two months, I made some from Star Wars fabric because Star Wars is fun.

I am so thankful for this specialist and he isn’t even the doctor. There are so many PA that know much more than MD do. I have seen so many providers that have no idea what EDS is and even google it in front of me.

There are good providers out there, they just need to be found. Here in the North Country, I have been incredibly fortunate. If you have not found yours, keep looking. You will find them.

Published by Aviva Seigler

Aviva Seigler is the executive director at Fierce Autistics and Allies. She is a writer, an activist, and an advocate. She is an LGBTQ+ autistic from South Florida, is married to a very supportive husband, and has six children.

She has been fighting the CD protocol and other quack treatments since 2014.

She is a veterinary technologist (LPN for pets). She has her associates and bachelors degree in Veterinary Technology from St. Petersburg College.

She is very involved with scouting with her six children.

Three of the children are autistic but all are Neurodivergent.

Her hope is to bridge the gap between allies and autistics while fighting the pseudoscience that threatens all people, not just autistics.
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