Vascular Complications in EDS Q&A with Dr. Sherene Shalhub & Dr. James Black | English (EN)

[@michelebenedetti2674]

Thank you so much for this podcast. My 26 year old son has not yet been officially diagnosed with EDS yet but almost died in October from a duodenum perforation

[@missusy72]

Hypermobile, ASD, Low BP, Multiple Dislocations, ELN Mutation, MCI, Ocular Migraines, early menopause here....This list goes on, and on, and now I am seeing my children suffer on various degrees. These talks make a difference! Thank you!

[@Wondertwinpowersactivate]

So am I 😢 the worst part is seeing my daughter (30) suffer.

[@BlueBirdsSong]

I have vEDS, I also have severe Hyper-Mobility. I have 2 Brain Aneurysms (one was coiled, the other can not be, it would be too dangerous. I also have I have an Aneurysm behind my Heart and was told the walls are very thin. I have Heart Disease with High Blood Pressure. I recently passed out, I went down without even trying to brace myself ( I know this only because I woke up with my arms down at my sides, I have no idea how long I was out because I was alone. I have had 3 Strokes, dislocations, lost all my teeth (they just slipped off my gums). Anyway, I’m allergic to tons of meds and the dyes used to do tests. so much more. I’m scared because I don’t get any help from my R. Doctor. Then a mass was found in my lower Right Quadrant of my belly. My brother had a AV Malformation in his brain. When I used to exercise I would get excruciating pain in my neck on both sides of my throat. It felt like the those Jugular veins?, were going to explode. They would pound so hard. I have a valve problem in my heart that causes “Back Wash”. My moms sister had this and had to have a valve replacement that didn’t work for very long. I have been told that I’m terminal as far as the Aneurysm behind my heRt, I may have more, my grandma had an Aortic one in her belly. My other Grandma just dropped down dead while making her bed, she had an Aneurysm. I went on too much I’m just scared, is there anything I can do or Doctor I should see? The other weird thing is I retain so much fluid that my left side, legs and arms look deformed. I went from weighing 100 to 110 pounds at 5’3” tall to 229 pounds. I’m not on Steroids, I don’t know what is happening. I was on high doses of Prednisone for my Crohn’s Disease at one point for almost a year I was taking 80mg a day for almost a year. This was years ago, but I was on those high doses off and on for years. Could it be Cushing Disease or Syndrome, sorry I don’t know the difference if there even is one? Any information would help because Doctors laugh and make fun of me even and especially in the hospital. I was in that time because I had to call an ambulance because I had used the washroom thought I was done felt like I had to go again and like a fire hose blood came out of me and filled the toilet. I made the Paramedic look so that the hospital people would believe me. They said there was nothing wrong with me. The next day at home I started bleeding again and just stayed home, I couldn’t go through that again. I’m sorry I went on so much I just feel so alone and abandoned by the Doctors who are supposed to help me. Thank you for your time.

[@franzpeters3824]

You are lucky to have survived so far. I hope you still have some years.

[@BlueBirdsSong]

@@franzpeters3824 I edited my comment, thank you for your comment. I wish I felt lucky. Sorry if the spelling is bad, I have had a Retnal Detachment and am now having another one so I have to get to the doctor. I also have Macular problems in both eyes and have constant double vision and things I look at parts will be missing. I’m now losing my sight. Sorry not meant to be a pity party just the truth.

[@HOWDOYOUSERVICE]

Hey ... i hope you are fine and you are still fighting :/

[@tammysummerswoodbeck1353]

I have vEDS and fibromuscular dysplasia. Do these tend to go together?

[@TheEhlersDanlosSociety]

Hi Tammy, do contact our helpline team who can advise and offer support: www.ehlers-danlos.com/eds-helpline/