Elle Hazlett - EDS and CRPS
Meet Elle Hazlett. Elle is an artist. She loves drawing and tells me that she has been drawing since she was a preteen. She recently invested in the tools for digital art and she is in love! “I started a RedBubble shop and am very excited about it. I want to make all kinds of designs but I think it’s pretty cool to continue my advocacy there by creating some designs for rare diseases too.” Elle has a love for coffee, like 3/4 of the world does. Elle was homeschooled all the way up until college, which turned out to be really good for her since she got to take a year off school when she got sick (“but I was already a year ahead because I did school with my twin brothers so I ended up graduating on time”). “I have three older brothers. The twins are 11 months older than me and I’m the youngest. We are really close which I love about us. We actually all went to the same college and for one year, we were all there at the same time. It’s been really helpful to have them. The twins just graduated and I have one more year left. I’m also a big animal lover. My dog passed away last year, but I loved him very, very much and fully intend to have to have lots of dogs once I have my own place. I can’t remember if I’ve mentioned this yet, but I’m also hoping to get a career in Rare Disease/disability advocacy so I’m obviously very much involved in that. I just finished a month-long campaign on my Instagram for EDS Awareness Month (feel free to check that out!) and I plan to do it again in October for CRPS Awareness Month since I got some pretty good feedback on it. I also want to start a blog very soon where I can write more about all of this too.”
She is diagnosed with two different conditions. She was diagnosed with the first one a week after her 16th birthday. It is called Complex Regional Pain Syndrome (CRPS) and she says that “it is the most painful condition known to modern medicine.” It causes the nervous system to be hyperactive and hypersensitive. This causes extreme burning and stabbing pain in the affected areas. This pain can be triggered by vibrations as small as a voice or the breeze as an A/C. “Mine started in my left ankle which had been broken in a gymnastics accident I didn’t cause. It eventually spread to my entire body. I received what I believe to be a lifesaving treatment for it when I was 17 but before that I was bed bound and with as little light and sound stimulus as possible. A year after starting that treatment, I even went to college. So it’s my miracle to say the least.” The second condition Elle has is called Hypermobile Ehlers-Danlos Syndrome (hEDS). “Although this condition is congenital, I wasn’t symptomatic until I got CRPS because I was always very fit. hEDS is a connective tissue disorder that causes damage to collagen making the connective tissue fragile and far too stretchy.” There are 13 different subtypes of EDS based on what system it affects most. I have interviewed people with EDS before, and I have even based my book on a girl who has EDS. Even one of my favorite actresses, Jameela Jamil, is diagnosed with EDS and is very open about it. Elle’s EDS (hypermobile) primarily affects her joints. “I’ve always been incredibly flexible (hence gymnastics) but after I became symptomatic, I started having more and more subluxations and dislocations. It also causes something called Dysautonomia (specifically POTS in me) which makes my sympathetic nervous system hyperactive. So my HR is always high and I get dizzy really easily, and I have anxiety.”
I asked Elle to describe her daily life for me and she said, “Well, it can vary. Currently since I’m not in school, I can afford to take the time to rest when I need it. I have really bad insomnia and have barely slept this past week so I’ve been kind of a sloth as of late. Fatigue is one of my biggest limitations. I have to be very careful how I spend my time (ever heard of the Spoon Theory? It explains this perfectly). I’ve kind of just developed small coping mechanisms for each little thing I deal with. For instance, I have to give speeches in classes sometimes. We can do them from notes but I always just pretty much memorize them because I’m dyslexic. I also study in very short blocks and switch between subjects a lot to fight off brain fog. I’m very careful about what I eat and where I go (I’m allergic to fragrances so I stay VERY far away from places like Bath and Body Works and the mall most of the time.) I do several treatments a day. I take many supplements to help with the vitamin and mineral deficiencies I have. I take baths with epsom salts and baking soda as a very gentle detox (my body does NOT do well with most detoxes because of my MTHFR mutations). And lastly, I do a treatment called VECTTOR every night (I think I mentioned it above). It’s an electro stimulus machine.
I asked Elle what her initial reaction to getting diagnosed was and she responded with, “Well the most noteworthy one was the first diagnosis of CRPS. I was really lucky to get only fairly early and also lucky with how I got it. I had been in immobilization following my gymnastics accident for 17 weeks without improvement. My sports med doctor reluctantly sent me for more imaging. It was actually the radiologist who suggested I had CRPS based on his findings. When I went for my consultation with the doctor, he didn’t examine me at all. Barely even looked at my ankle. He told me that I didn’t have it. He then said even if I did, I’d grow out of it (firstly, that’s false and secondly I was sixteen. I had been done growing for about a year and a half.) Then he told me to look it up online because there are a lot of people who think they have it but they really don’t. Obviously, my mom immediately looked it up when she got home. She was shocked at it because the people she was reading about were in so much more pain than me. But as the months wore on and I got worse and worse she realized that the radiologist was correct and we had to go to several more doctors to get the official diagnosis. I was diagnosed with my EDS by a doctor who was originally treating me for CRPS. He specializes in CRPS and he knew that EDS was a comorbidity of it. Having heard I was a gymnast, he asked about symptoms associated with EDS and then diagnosed me with Hypermobility Syndrome (which is clinically the same thing). I was diagnosed with POTS by the TX doctor that saved my life. He did a whole day's worth of testing when I first got there and found out by testing my circulation that I had POTS. I’ve had a lot of doctors (especially early on) who clearly just spent five minutes on their lunch break looking up CRPS and then seeing me “look fine” in their office for a few minutes and tell me I don’t have it or it’s all in my head. This can be very frustrating and anger inducing because doctors never see the worst of it. They only see the best of me when I’m trying to hold it in and ‘look normal.’”
Elle has been such a strong advocate for rare diseases. She had her first experience with advocacy at the Be The Match student organization at Calvin University. “My friend asked me to be his VP freshman year and I’ve been doing it three years now. I just took over as president. BTM helps find bone marrow donors for people with blood cancer, coincidentally most of which are rare! I loved my experience there and ended up speaking on a couple of disability panels at my school because I was asked by my disability coordinator. I was happily surprised at the response and genuine curiosity of people to understand the experience (I think most people are too scared to ask in normal conversation though. I try to be open and frank). Last summer, as part of a research fellowship program, I worked with two professors (from Biology and Chemistry) who started the Rare Disease Research & Support Group at Calvin. They do research on BCS1L mutations but have been wanting to do more for the patients. That’s where I came in. I had recently switched from a biochem major to a communication major so I had the right mix of understanding in science, experience, and also some communication skills. My main project was writing a K-5 curriculum to educate children about rare diseases (since 50% of rare disease patients are children, yet before this, there was no curricular material for them). Along the way, I picked up more projects. I was added to the Rare Disease Day Symposium 2020 planning committee. The event was on Feb 29, 2020 and about 400 people were in attendance. Beyond helping plan the event, I also collected a group of panelists for the patient panel. I hosted, moderated, and participated in the panel. It was by far the most fulfilling experience I’ve had. I had gone to the previous symposium in 2018 (I was invited by one of the professors I ended up working for!) and it was an incredible experience. It was the first time I had ever been around so many people like me who cared for me. I was so moved by the patient speakers in 2018. It was so incredibly humbling to get the same reaction as a speaker in 2020. At the symposium, I also piloted the materials I had written twice in breakout sessions (which I’d also previously piloted several times including with some Girl Scouts). Then I gave a wrap up speech on the breakout session in the general closing session. During my work last summer, I also met a couple of people with whom I started a NORD chapter of Students for Rare at my college. We’ve hosted movie nights, speakers, and plan to do so much more! I am the president of that student org and we’ve been active since this last fall (@students.for.rare on Instagram if you want to see what we’ve done). I was only supposed to be working with those professors for the summer, but they kept me on to continue working on the materials and symposium through fall and spring. I’m not doing a lot for them this summer (COVID and all) but have another internship with them in the fall again. I am helping to plan the 2020 symposium. As far as personal projects, for the month of May, I posted once every day about what it’s like to live with hEDS (May is EDS awareness month) and I plan to do it again for cRPS in October. Like I said, I love art, so I’ve been making a few awareness designs for my RedBubble shop that I just started this summer. Oh, almost forgot! Whilst I was at the 2020 symposium a Public Health GVSU professor asked me to come speak at her class and I also made a connection to the CEO of NORD (which is like my dream job, so very exciting!). I have yet to meet my professors about what projects besides the symposium I’ll be working on in the fall, but I’ve been assured that they have lots of ideas for me!”
Elle’s advice for others with the same disorder would be, “Well firstly, I’d say get connected. It’s really hard to do this on your own and having people who truly understand what you are going through is priceless. I met most of my CRPS friends on a Facebook support group (and I wished I’d have joined in sooner!). Secondly, and this can be a tough one, but you have to find a way to always hope. It can be very overwhelming, especially when the treatments you’re trying aren’t working, but people with this disease have gotten better; some even into remission! You are never too far gone to have hope! And if you are struggling with this, try to have a close group of people (whether it be family, friends, or other CRPS warriors), who can get you through a rough day. When someone posts about a rough day on my FB support group, the comments become inundated with kind words, prayers, and of course memes (because laughter really is the best medicine!). Nothing beats the support of a community you know will have your back and lend an ear.” I absolutely love this advice. She is absolutely right. It’s always better to have someone to go through struggling times with than facing them alone. Social media is a great way to meet people who have similar interests in you or, in this case, the same rare diseases. My advice would also be for those who have rare diseases to get social media, because nowadays, that’s the easiest way to make friends. Facebook and Instagram have tons of pages that will cater to you. So check it out!
Elle’s message for the world is, “Compassion. When I think about all the negative experiences I’ve had with others relating to my illness, the majority of them stem from people not understanding my illness or my limitations. I never want to force my worldview or opinions on people. However, I think if people at least know where I’m coming from, there’s a lot more of a chance for us to have a healthy discussion about it and maybe learn something from each other. The wisest people never stop learning.”
Elle has truly been the most patient person ever. I have been responding late recently due to loads of work that has been piling on me. I haven’t been the most active person, this whole summer, but I plan on getting back to interviewing, writing posts, and posting on the blog. I have been working on a few projects, including a research article and project on Tay Sachs and the gene therapy that is working to find a working cure for it. I don’t want to say too much, as I’m not sure where it will be heading. Right now, it’s an idea that I’ve been putting together, and I hope to finally put that idea into reality. If you’d like to help with the Tay Sachs article, please reach out to me! My email is below.
If you’d like to learn more about Elle’s diseases, please visit the links below:
Contact me via email at firstname.lastname@example.org
Love you all and thank you for the patience,