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Patients can suffer debilitating setbacks from symptoms of EDS/HSD, so it’s important to take the opportunity to highlight patient success stories. We have started a series where we will be highlighting some of these, contributed by our own patients.
We know there is no known decreased life expectancy for someone with hEDS or HSD, but research tells us that symptoms of EDS/HSD may never go away completely. Our treatment goals then focus on quality of life. There is no better testament to achieving a high quality of life than reaching career goals that bring fulfilment and joy.
This post is dedicated to our patient Zakary Simmons. He shares his story below.
My current job title is Police Officer with the Titusville Police Department as well as currently being assigned to the SWAT Team. Living with the symptoms of EDS in and around work and a busy home life has definitely presented its challenges for me. I’ve welcomed these challenges as a way to push me into greater things.
The most interesting part is that no two days are the same with EDS - at least in my case. Some days are terrible, and others aren’t too bad. The way I get through the bad days of symptoms is simply mental discipline and motivation.
One amazing quote from Marcus Aurelius says, “You have power over your mind - not outside events. Realize this, and you will find strength”. So, although my symptoms may be overbearing at times, they are manageable, whether it be through medical remedies or the simple willpower to push through the day.
I find that the best way to cope with EDS is to push the limits and find out what my body is truly capable of. In doing so I’ve found that I can turn my EDS into an advantage over those who would be considered “normal” or with great genetics. So, the overall point is that EDS can be a true superpower if someone makes it to be and anyone is capable of doing anything if they truly work hard at it and put their mind to it.
Have you encountered similar scenarios in your life? We would love to hear your thoughts in the comments below. Stay tuned for more patient stories in the future too.
Author: Dacre Knight, MD, MS, FACP
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Dr Knight, I have been desperately searching for qualified doctors to treat my daughter, age 34. She has been completely debilitated for the past year and we are currently applying for disability for her. She lives in Asheville NC and her PCP believes she has hypermobility, probably hEDS or HDS. PCP referred who to a PT which is helping. However, PCP isn't knowledgeable about EDS and doesn't treat it. We've been unable to find any doctors in her area that do. Would it be possible for her to be seen at the EDS Clinic at Mayo Clinic in Jacksonville? Any assistance or advice you can provide would be greatly appreciated!
I wish Rochester had more people with the knowledge to diagnose hEDS. The screening criteria is even located in the Epic Screening tools. Unfortunately, not all of us can travel to the Jacksonville, FL location.
I would think you would only need a referral from someone in the Rochester system.
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1 Reaction@edsmom2, you can submit a request to be seen at Mayo Clinic EDS Clinic or ask your daughter's PCP to submit a physician referral. Get started by completing the online form or calling Mayo Clinic in Jacksonville. You'll find all the information on this webpage: http://mayocl.in/1mtmR63
@csalter, there are Ehlers-Danlos syndrome experts at the Rochester, MN location of Mayo Clinic. See listing of specialists and filter by location https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/doctors-departments/ddc-20362171
Thanks for your input, Colleen. However, I have already called the EDS Clinic at Mayo in Jacksonville. They gave me an appointment for a phone call to schedule an actual appointment. When they didn't call me at the day/time scheduled, I called them. They advised that they were no longer accepting appointments. I asked if there was a wait list...no. I asked how often I should call to try to get in...weekly, monthly, etc. They said I could try to call again in a year.
Is there any way you could look into this and see if this info is correct, and possibly convince them to start a waiting list? Surely you can see (hear) how frustrating this is. Thank you! Ginny
Please see my reply to Colleen Young below. So frustrating. Best of luck to you! Ginny
Hi- I realize this is an older post, but figured I’d try reaching out just in case, because I’ve definitely been in your daughter’s shoes and it can be an agonizing wait. I’m around your daughter’s age and was diagnosed with HSD last year after long suspecting it, and I have POTS.
Were you ever able to get in contact with the EDS Clinic at Jacksonville?
I’m a little surprised by what happened to you (so frustrating!!!), but given my recent experiences with the EDS Clinic, unfortunately I’m not exactly shocked. I started a workup with the EDS Clinic, and while it started smoothly, things started to fall apart administratively after I got there. It’s a very small clinic and team and I suspect they’re short-staffed and/or overwhelmed with appointment requests.
But as Colleen had mentioned, I called (this was in May 2022) the number on the website and inquired about an appointment. The person I spoke to asked me a handful of screening questions. I’ve been struggling with this for a long time and I’m familiar with my medical history, so I knew all the answers. I was surprised to find that was enough for her to put me on the wait list. Maybe things have changed as the pool of people needing help grew. She said in some situations, she has to have a member of the clinical team speak with the person; maybe that’s what happened to you? Still, that’s horrible that no one called at the appointed time. But I’ve called and had to message repeatedly to follow up on administrative and scheduling questions before; the longest it took me to get a response was 6 weeks.
I do know at times since then they’ve had to close the waiting list. If you’re up to it, you and your daughter could keep calling periodically. The one good thing about the number being public is you could call directly and talk to a human.
To be honest, I’ve gotten the most help from skilled PTs, OTs, and online resources and bloggers. (Happy to send some along if it would help—the info helped me know what things to ask for from my PCP and PTs). Although EDS/HSD is so marginalized in the medical community, there is a robust online community. I know it’s not the same as personalized care, but depending on the symptoms and if it’s hypermobility-type EDS, I’ve been able to get father than I thought I could for chronic pain and fatigue with PT, OT, Google and a supportive and invested PCP. GI symptoms, screening for heart conditions associated with EDS, and fatigue have been more difficult to address, but good PTs with experience with Hypermobility and Central Sensitization and POTS took me farther than any doctor probably could have. It’s crucial to understand Central Sensitization because many people with EDS/HSD also have it.
What kind of symptoms does your daughter have?
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1 ReactionTook me for years to get on disability if your daughter can do and you job like computer work deal considered out and they consider your education that she knows how to do computer could deny it. I'm going to go on how much education you have and if you can do other jobs like a sitting job they could deny it.