vascular ehlers-danlos syndrome

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EDS Diagnosis

Finally saw a new doctor today. After a few years of struggling through bad doctor after bad doctor, I finally found my dream doctor. He listened to me and took my seriously. He dignosed me with EDS, but we’ll be doing some genetic testing to see which subtype. He thinks it may be vascular, I’m hoping it’s just hypermoblie.
After so long of not being heard, I am so happy to be making progress on this. A diginsos doesnt change anything about my body, but it helps me to feel like I’m not alone and I’m not crazy. The entire time my new doctor talked to me, he made me feel valid and reasonable. Not something I’m used to feeling at a doctors office.
Right before Covid hit, I talked to my old doctor about EDS and he never did any testing for it. So after months of pushing for this testing, I feel almost like I’ve won. So thankful to finally feel heard.
All in all, I’m counting this as a good day!
#ChronicIllnessEDS #HypermobileTypeEDS #VascularEhlersdanlosSyndrome

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Who would have thought things could get so much worse?

On the 24th of August I was crying in my therapists office and ready to go home to kill myself if I didn’t get some form of help and soon. After that appointment I reached out to my psychiatrist and was able to get some medications to actually help me sleep. Those helped a bit at least, at least made my desperation to kill myself a little lower. Since then I had a random test for Covid because my pharmacist just started testing and wanted to practice and I was waiting for at least another hour anyway for my prescriptions to be filled. A week later I just found out that I’m positive for covid which is terrifying to me, especially with vascular EDS. Because I didn’t expect to have it I went to see my parents and I think I gave it to my mom. And I went to visit my family because I’m having a hard time dealing with the fact that the one Aunty I’m close to got diagnosed recently with a remote dissection of an inter cranial artery and an aneurysm on her brain and she has vascular Ehlers Danlos Syndrome and is 49 right now which terrifies me. I just can’t deal with it anymore. I thought I couldn’t before and then my world completely fell apart comparend to what I have believed possible. I’m stuck self isolating at home all alone and I’m scared to even sleep. My breathing isn’t great and I’m absolutely terrified. It wouldn’t scare me so much if I could be sure I would just die. Instead of have a chance of living but with deficits and more issues in my life that vascular EDS has already caused. I’m terrified of losing my Aunty who is my moms baby sister. I’m horrified that I could have possibly given Covid to my mom who is at even more risk than I am. I just can’t handle it anymore. I don’t want to live anymore. I don’t want to suffer anymore. I don’t want to hurt anymore. I don’t want to hurt anyone I love anymore. Posting a picture of my Baby because she’s the one thing that truly keeps me going at this point. If I believed that anyone would take care of her how she needs it then I’d be gone tonight for sure. #Suicide #Depression #COVID19 #VascularEhlersdanlosSyndrome #EhlersDanlosSyndrome #Pain #Family #Aneurysm

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What do you do?

I have Vascular Ehlers Danlos Syndrome, I’m in a lot of pain on a daily basis and pending on the day I’m able to do very little or sometimes up to 50% of what I used to be able to do, I don’t have a job and don’t see that being something possible in the near future. I want to have a life and get out of my house more but especially now that covid hit I really don’t know what to do. I can’t seem to find volunteer positions that allow me to come in as I can but stay home when I really can’t do it and that also interest me (helping people is really all I care about). I can’t figure out what to do to meet people as right now I don’t have any friends at all, Ive looked into the museums around the city and the art gallery, all places that I can come up with in my mind are closed or not possible right now because of covid and it’s so frustrating. I use all precautions, masks, hand sanitizer or washing when possible, social distancing... but I can’t stay at home anymore. The company from my cat isn’t enough to keep me from going insane anymore and I’ve worked way too hard on improving my mental health to continue to let it go downhill. I’m hoping maybe someone else who understands the exhaustion and pain can help me come up with possible things I can do to make friends and get out. Any suggestion is a good suggestion!! Thanks for reading this far and for any advice you might have for this lonely zebra 🦓 enjoy the pic of my little girl that keeps me going ❤️ #EhlersDanlosSyndrome #COVID19 #Depression #Anxiety #VascularEhlersdanlosSyndrome #getmeoutofmyhouse #lonely #MakeFriends


vEDS and TENS units

My mom has vEDS, and I have fibromyalgia and hypermobility, so I have a TENS unit. 3 weeks ago, her hand decided to start hurting all the sudden, and it's been like that since. It's her dominant hand, and she still has to work, but it ranges from her hand to her upper arm. I was wondering if anyone that has vEDS has safely used a TENS unit? I want to help because I relate to that pain, but I don't know if it's safe, especially since we can't go to the doctor at this time. Thanks. #VascularEhlersdanlosSyndrome #ChronicIllness #EhlersDanlosSyndrome

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Are we really “the weakest among us”?

Amidst all the discussion on coronovirus one thing in particular has stuck out to me. Using the term, “the weakest among us”, to describe people with underlying medical conditions is a slippery slope in how the world views us.

Yes, I’m a person with a myriad of serious medical conditions, making my immune system more vulnerable than healthier people. I’ve endured 39 brain and spinal surgeries, have survived a stroke and multiple carotid and vertebral artery dissections. I push through severe pain every second of my existence. I’ve come through unimaginable suffering and am still here; fighting every moment.

And I’M, “the weakest among us”??

The majority of people, who don’t live with the conditions we do, would not be able to survive in our situations. I’ve seen the Facebook posts. The ones letting us know they caught the flu and how it upended their lives because they can’t go to the gym for 3 days. And they’re angry because they’ve had to be in bed for a day or two. Not even realizing how lucky they are that their immune system is healthy enough to fight off a cold or virus. And in a few days they will return to their normal, healthy selves.

Those of us who have braved living with intense suffering, comparatively, I could argue are the strongest among us.

I understand calling us weak during this time is not meant to be derogatory or describe our character. However it does perpetuate the stigma that those of us who fight relentlessly to do things most take for granted, are weaker people than our healthy counterparts.

In order to not continue enforcing this stigma, it would be helpful if the public used more specific language that focused on our health. For instance, taking the time to say, “those with compromised immune systems,” “underlying medical conditions,” or even, “vulnerable populations.”

Using the term “weak” to describe our immune systems, while accurate in many cases, has the propensity to bleed over into characterizing us as weak people. Which couldn’t be further from the truth.

While our bodies may function differently than many, we are some of the strongest people you will ever encounter.

#ChronicIllness #AutonomicDysfunction #EhlersDanlosSyndrome #ChiariMalformation #MentalHealth #Hydrocephalus #Stroke #AddisonsDisease #VascularEhlersdanlosSyndrome #FunctionalNeurologicalDisorder #COVID19


How do you create routine when your body is constantly changing?

I’m going to tell a bit of the longer story because it makes my anxiety happy but the question itself is really just how do you set up a routine when nothing ever seems routine in life?

So I’m a 24 year old and I live with #VascularEhlersdanlosSyndrome , #HidradenitisSuppurativa , #Anxiety , and #Depression. I’m on disability and unable to work because of the physical issues, however, that typically leaves me up at all hours of the night playing on my phone, and sleeping throughout the day. I want to find a way to get up and exercise a bit, ok let’s be honest it’s going to be more of just a few stretches and I can’t handle a whole lot at a time so it has to be somehow scheduled but somehow less than or very max 5 minutes at a time, I find when I think about it though it stresses me out thinking I’ll hurt worse after and I don’t do anything. Other things specifically that I need to actually schedule to do because of depression include brushing my teeth twice a day, especially because of the risks to my gums with EDS and I need to start showering more than once every few days. Just life things that id like to include but don’t need to have written down per se cause they just have to happen include laundry, dishes, cleaning, litter box, and cleaning the fish tank.

I don’t know how to schedule things because some days I want to get out of bed but when I try I’m just dizzy the entire time, or I’m in too much pain, or nauseated, or something else on the neverending list. other times I start and I could have had all the energy in the world and suddenly I’m drained. The days I have appointments in the morning and I make efforts to not nap the day before and try sleeping the night before are the worst nights. I don’t know if any of this post really made sense because it’s now 7AM and I haven’t been able to sleep at night but I slept all day yesterday. I’m hoping maybe a schedule would help me sleep better and have some extra energy. If you’ve made it through this and made any sense of this I truly appreciate anything you have for advice to offer. Thanks ❤️


Does anyone struggle with Vascular EDS? #EhlersDanlosSyndrome

I have always bruised easily since i was a child. Now I know why. But more recently I have been seeing my bruises appear without reason? If I sit for too long I feel palpitation of some sort. If I apply additional pressure on my body from clothes or anything I feel it too. Does anyone else struggle with this? And have suggestions on how to better adjust to this? #VascularEhlersdanlosSyndrome

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Pinched nerve and burst vein

All from picking up my drink.... this is it starting . Has anyone else experienced this? The nerve is still trapped and not sure whether hot and cold treatment is best with the bruising now appearing #EhlersDanlosSyndrome #Zebraproblems #ChronicIllness #VascularEhlersdanlosSyndrome