I know this is a job for these professionals, but I hope they know how much it means that they dedicate themselves to this awful condition. I lost my grandmother in 2000 to a brain aneurysm, and my mother nearly died from an aortic dissection 10 years ago. I'm a 25-year-old male, genetically confirmed for VEDS, and I have just suffered my first major event of a vertebral artery dissection and was also discovered with a carotid artery aneurysm. This condition is difficult, but it brings me real hope knowing people are fighting for us, instead of calling us a "ticking time bomb." Thank you, from my family to yours

I also had a disclosure for Huntingtons Disorder, it took two years at JHH to conclude. The psyche profile was crucial to see if I could handle a positive result. VEDS diagnosis offered none of this at the time of my VEDS diagnosis. I did however have total confidence in the doctor and had followed his research and papers for a few years before requesting the genetic test. I was more concerned with my two children as they presented with my same symptom. I had already experienced a ruptured kidney and pulmonary artery. My research led me to faulty connective tissue in a Mercks Manual....the physicians I saw had no clue about VEDS. That was then, today we have so many resources, Thank you.

I’m from the USA and I have Vascular EDS along with Severe Hypertension Valve problems with severe Edema in legs Arms Hands Feet. ,2 Brain Aneurysms and an Aortic one by my Heart. Strokes, where the Neurologist hit me because when she asked me to lift my leg it would shake so she hit me and told me to stop it. I’ve had 3 Spontaneous Pneumothorax. Crohn’s disease the list goes on and on. I also have Dislocations of joints, Severe Hyper-mobility, lots of allergies to medications, some Anaphylactic. I went to a large Hospital for treatment of my Hypertension, the Doctor wanted to admit me to Cardiology but I waited for 6 hours in a wheelchair for 6 hours. I finally had to leave because the pain was at a 10+++++ and COVID everywhere . I wish I was just over gone. I have been laughed at, told me ( by pointing to the doctors head) inferring I am crazy. Yes I have had my skin just tear open and bleed. I’m tired and just don’t care anymore. Mental health is a joke for someone on disability, the doctors don’t care. Nothing helps the pain. What do I do, please spell the name of that medicine, because no one cares. Help….

@mariamaria2751

2 жыл бұрын

I feel your comment. That dr that slapped you should be fired !! ..don't listen to Aholes that don't believe you , the Dr's are stupid and can't figure us out so , they just have to point the finger at us and tell us it's all in our heads. The fact you didn't get a response from a Dr or anybody at the eds society is shameful , there should be a group from here that exclusively reach out just to answer questions n and ppl who feel desperate like you , someone should get back to you

@free2bkittenforever

Жыл бұрын

What state are you located in?

There are two clinical trials with VEDS in U.S. , one is AR101, and another is Celiprolol.

Only in the US do we laugh at physicians and call them quacks for relating the benefits of Vitamin C. We require more C in times of stress, trauma, and when syndromes like VEDS are presented. It does cost very little for the work it performs in the VEDS body.

Be sure to have the Medic Alert on your charts by the Records Administration at your local hospital beforehand. Unless you do this VEDS will not be on your chart. You have to create the Alert to have it available in the ER when you present there. Now mine is in big red fonts posted over my gurney or bed. Even the use of koban vs band aids needs to be posted. The Alert saves lives.

Is it possible to have some of the VEDS symptoms and have Classic Like?

@TheEhlersDanlosSociety

2 жыл бұрын

Yes, there can be substantial overlap between the EDS types in terms of symptoms. Genetically, you would test positive for one type, but could show symptoms of other types.

Thanks for the fluoroquinolones data.

Muito esclarecedor. Para doentes com este síndrome é necessário o máximo de informação possível. O que por vezes é difícil.

@teresareinert8271

7 ай бұрын

Wow! I’ve been on blood thinners since 2009 and am getting an appointment for EDS / vEds. I score an easy 7 on the scale for flexibility and finding more complications with joints being dislocated even toes turning up on the last joint in my shoes. I have a-fb and many other health issues.

Can physicians not differentiate bruising from spontaneous hemorrhaging with VEDS? VEDS bleeding does present as a severe hematoma, but there are differences. One vascular surgeon told me he did not want to see my messy vasculature on his operating table, lol, this is why I remain healthy and ready for the allele knockdown. I do have a good team today JHHH, Hershey, and NIH. Locally I did survive a ruptured splenic artery recently, life-flighted to a trauma surgeon at Hershey. A resident caring for me was in the ER when my ambulance arrived. He needs a medal for his care and resources. This was the same ER that allowed my kidney to rupture after three weeks of misdiagnosis. VEDS is complex.

I am on my way to getting diagnosed and see the geneticist in November. I have all the main symptoms except easy bruising/skin fragility. I don’t know what type I have. I am a teenager, and don’t have too severe symptoms yet. Any advice?

@TheEhlersDanlosSociety

2 жыл бұрын

Your geneticist can assess you thoroughly and send you for genetic testing if needed and so they are best placed to confirm which type of EDS or HSD you have. You can continue to follow advice for your symptoms however without knowing which type of EDS you have. Your primary care physician can work with you to help manage your symptoms, and provide supported self management measures where possible too.

@mariamaria2751

2 жыл бұрын

Don't go to a chiro , or a PT , do anything to build muscle and keep it , go for regular walks , and just try to keep all your muscles strong

how can the vagus nerve be stimulated?

@kelsiellie

2 жыл бұрын

I put ice packs on my chest and then lean with my head between my legs to stimulate mine, when my HR is very high. I have vEDS and POTS and am prone to having tachycardia episodes in the 200s and bradycardia episodes in the 30s. It helps!

Schade, ich kann kein Englisch. Wäre für mich bestimmt sehr interessant, da auch ich Veds habe

can you explain in hindi

@TheEhlersDanlosSociety

2 жыл бұрын

Unfortunately, we do not have these resources in Hindi currently. You can email any questions to our helpline in Hindi and we can use Google translate to help with responses wherever possible: ehlers-danlos.com/eds-helpline