Ehlers-Danlos Syndrome

ktwlpn, LPN · Feb 26, 2016

Have you spoken with your physician about your goal? I think you should start there.And after that try to speak with someone in admissions at a local nursing program.I think your future depends on the severity of your disease.Sorry I can't help you more.Good Luck

SpEdtacular, MSN, RN, EMT-P · Feb 26, 2016

Hey OP,

My younger sister has Ehlers-Danlos Syndrome and was on disability for a while because of it. She used to do EMS but having to lift and move people caused serious problems with her shoulder (dislocations, surgery) and her ankles (frequent sprains and strains). She is now pursuing a degree in social work and absolutely loves it. She still gets to help patients but doesn't have to risk hurting herself doing lifting and moving.

I agree with the other poster about asking local nursing programs if they would be able to accommodate you, but it might be difficult because patient care can be very physically demanding, and if you do bedside nursing, lifting and moving patients is not something you can avoid indefinitely. Do you have an idea what kind of nursing you would be interested in doing?

KaffeineFiend · Mar 12, 2016

It depends on your complications.

I have hypermobility syndrome and on my to being diagnosed with EDS (hypermobile type)

I also have Fibromyalgia, chronic migraines and a leg that has had 7 surgeries. Plus other stuff

Most of these diagnoses came after being injured in a car accident.

so I had already gone to nursing school.

I was working already as an RN and then took almost 5 years of rehab and being in a wheelchair most of that time, until I was well enough to go back to work.

All this being said because I can understand your position from an unique perspective.

To pursue nursing school you would need

To have your POTS as stable as possible. And ensure that the treatment plan you are on would stand up to the stress and physical demands of nursing school and clinicals

A well set pain management plan. Depending on your EDS symptoms you might need a pain management Doctor. Have braces and splints for subluxing joints, prescribed and well worn before starting clinical rotation.

If instead your EDS affects your cardiac system. Then you and your cardiologist need to have a well set plan, again, that would keep you stable despite stress and physical demands.

search the schools in your area, or as far as you want to go. But make sure you have your doctors in place wherever you are.

Speak with the disabilities office of each school.

Depending on your limitations, have a list of accessibility needs and accommodations, permission for extra days off. Is brain fog an issue due to pain? Then you may need extra time for tests. Class notes.

ask for their experience with accomodating other students in the same program, or common accommodations for others with same limitations.

research disability office services online to get ideas.

I did not do school when disabled. But the resources are there.

do you know what type of nursing you want to do?

probably a regular hospital unit of 12 hours standing, lifting patients. Won't be the best for you or your patients.

Ive always worked Psych because I love it. It worked out for me once I became disabled. It's not as physically demanding. But it's challenging in other ways. But I am able to sit a lot, and my shifts are 8 hours.

Many told me to go into case management, or work for insurance companies. They hire nurses that do consultations over the phone for their members.

Thats wasn't for me but physically it was possible.

op if you want this you can definitely do it!

It might be more challenging than it would for someone completely able bodiedwith no health issues, but you would obviously bring a unique element by being a patient who is a nurse í ½í¸€

Dont give up

kitzela · Apr 14, 2016

I have HEDS as well as POTS. It can be a challange to work but with a little planning its possible. I keep braces for my weakest joints with me in case of injury. I also bring gatorade to keep me hydrated. When you have HEDS you have to always be aware of your body mechanics and how do everything. I have worked on the floor for 8 years now. I have had several injuries but they have just made me more aware how to take of myself. I also think that because of my condition it has made me a better nurse. I understand what it is to be chronically ill and in pain. Dont give up on your dreams if this is what you want. There are many types of nursing, not just working on the floor. Good luck.

IceDancer · May 21, 2016

I think, as others have said, it depends on your physical limitations from those disorders. I can share my career experience with you, I have a hyper mobility disorder not specifically diagnosed, though I meet the testing qualifications for EDS (constant subluxation of my hip and shoulder joints and hypermobility in other joints) . My actual problem has been my thoracic spine, which is normally more stable and less prone to injury . It seems the connective tissue is just weak back there for me, the assumption has been that the hypermobility is related.

I started having pain in it when I first started nursing, though it was manageable. I worked in acute care for five years then switched to home care. Shortly after starting home care I ended up seeking answers to my pain issues and discovered the hypermobility as well as a herniated disc at T6. I worked in home care while in pain management for ten years. Home care was good for me because it allowed me to change position frequently and do charting lying down if need be, though the driving was the biggest challenge because sitting upright was difficult for me.

Last year I noticed the pain getting worse, I am now literally unable to sit in an upright chair for more than ten minutes without rapidly climbing pain, and standing still is even worse. I can't drive for long because I have to sit too vertically. I could not sit through a meeting at work. I was sleeping all the time if I was not working, and I did not feel like doing anything .

My MRI, which had remained unchanged for ten years is now showing herniations at T3-4 and T 8-9 as well as the T6-7 disc now compressing my spinal cord. The surgeon that evaluated me does not want to go in unless I have paralytic symptoms, which, thank goodness I do not. He said he has not had good luck with thoracic surgeries, not for pain relief anyway.

So I am done, at least for now. I stopped working in Nov of last year going out on a medical leave. I slept for nearly two months straight. Unless I was at PT or a MD appointment, I was asleep. I did not know it at the time but my body was simply worn out from trying to work in constant pain. In January, I kind of woke up and began an exercise program that I could do, picked up a new hobby, and gained back a great deal of strength. It is not enough to go back to work, but I have some quality of life now.

The moral of my story I suppose is that if you can find a job that works with your symptoms, go for it. There are few jobs that do not require sitting or standing, I have to lie back significantly most of the time, I can only do very short stints in an upright chair. My hardest days are seeing the doctor because of sitting in the waiting room. I hope you are not faced with limitations like that and that if you do have them, they allow you to work. I loved nursing, I was good at it, and I miss feeling useful sometimes. But I am finding new things to do with my life and my time that work within my limitations.