Hello, I’m Amanda- a long time friend of Aurelie’s. I have started this fundraiser for Aurelie’s hand splints after watching her journey through her EDS diagnosis and treatment and reflecting on the personal and financial impact of it all. If I am so overwhelmed, I can only imagine how privately stressed she must be (though if anyone knows Aurelie they know she wouldn’t let it show much). After much nagging she agreed to let me make this fundraiser to help relieve her of some of the fiscal strain this part of her EDS experience must cause.

Aurelie needs over $2000 in corrective hand braces for chronic pain in her hands, which require constant stabilization due to her EDS. These are made to look like regular jewelry but must be made to fit her specifically and take into account the way her particular hands move, where the pain is on each hand, and comfort as she will need to wear these the rest of her life. These serve medical purposes and are made by hand therapists, but unfortunately cannot be made in a medical facility- therefore can not be paid for by insurance despite being entirely a medical expense. There are temporary options such as plastic and foam braces her hand therapist can make her during particularly painful times in office. Unfortunately, these are large, break easily, cannot get wet or be washed, and require a new doctors appointment every time these breaks happen.

A part of EDS is heightened food sensitivity, which is already costly and time consuming. There is also physical therapy to help with other sublux issues, special hand therapy appointments, and general doctors appointments. This is a LOT in and of itself, even without the financial worries regarding her rings, and the hand therapists visits she has to squeeze into her full days for pain and breaks in her temporary splints.

We all know Aurelie as someone who loves quiet time to read, opportunities to travel, breaks in her day to love on her sweet pup Moka, and enjoy a nice cup of coffee or a good meal with friends. Lately however, Aurelie’s days are full of doctors appointments, physical therapy, and chronic hand pain that can even make it hard to hold her coffee mug and her books or play a nice game of tug-o- war with Moka. Travel is for the time being both financially and physically off the table. Aurelie is someone who gives so much to her friendships, as well as all of the children whose lives she touches. To all of you that love her, I’m sure this sounds as unfair as it does to me. It is my hope that we can all chip in a bit to take some of the strain off of our friend to let her get back to the things that fill her cup when she pours so much of herself into enriching the lives of others.

It also feels worth noting that Aurelie will eventually need to go to a specialized clinic that deals specifically with EDS treatment in order to get the correct treatment plan to allow her doctors to best treat her. These clinics are all a distance from Indiana and there is no guarantee how much insurance will even cover. There are more stressors and costs in the future with this, and the sooner Aurelie can handle her hand issues and expenses, the sooner she can move forward to this next leg in her journey- which will certainly make a significant positive impact in her experience.

I asked Aurelie to write a bit about EDS and how it impact her, and while I was going to take bits from it to share her struggle, she worded it so perfectly that I asked her if I could just share it directly- which she reluctantly agreed to. And so I will end with Aurelie’s own words and ask you all to join me in helping reduce the financial strain and general stress of our wonderful friend.

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In May 2022, I was officially diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS). Though, they started suspecting it the previous December.

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues make up 95% of our bodies, they provide support in skin, tendons, ligaments, blood vessels, internal organs, and bones. Common symptoms include joint hypermobility, affecting both large (elbows, knees) and small (fingers, toes) joints; soft, smooth skin that may be slightly elastic (stretchy) and bruises easily; and chronic musculoskeletal (muscle and bone) pain.

EDS explains a lot, like why I’ve been in and out of physical therapy since I was 19 but more so in the last 7 years. It explains all the injuries that most people and I assumed were just due to clumsiness. It actually also explains being clumsy, with EDS comes poor proprioception (your ability of knowing where your body is in space).

My hips, shoulder, shoulder blades, and tendons in my arms sublux pretty regularly, but my hands are what thrive on that word. Which is why THIS is happening. Strengthening hand muscles with EDS is essentially not enough of an option. There are just too many joints, tendons, ligaments, and muscles to achieve that when all your joints are messed up. So my occupational therapist and I have gone/are going with ring splints. Without ring splints, most things cause me pain. My fingers hyperextend when I type on a computer, when I’m on my phone scrolling or typing, holding a coffee mug, doing dishes, when I read, and general cleaning; they even hyperextend when I’m petting Moka. Joints hyperextending is what causes so much pain. Having the temporary splints my hand therapist made me make a huge difference in my ability to do life.

The doctors like to remind me that EDS is rare and they don’t have the means to do much, help much, they don’t know anything, there’s no cure, there’s no real treatment (it’s all physical therapy and not eating certain foods). It’s difficult to explain what it’s like to be in and out of the doctors, physical therapist, and occupational therapist office every week for the foreseeable future. It’s draining. Between the food intolerances, the countless supplements, the doctor visits, and all the at home exercises, it has become essentially a full time job in addition to already working a full time job.