Morristown Hospital Pediatric Grand Rounds Vascular Ehlers-Danlos Syndrome

Pediatric Grand Rounds, Morristown Hospital, NJ, April 21, 2022, virtual, with Dr. Shaine Morris, Dr. Anjali Chelliah, Heidi Green, and Katie Wright, Director of The VEDS Movement.

[@Misslynettelee]

TIA at 26 after many years of suspecting connective tissue disease. Now I get hemiplegic migraines with diplopia and anisocoria and I don't even go in. They called me a malingerer and tried to put me on prozac. My two children have visible veins and marfan like features, hypermobility in multiple areas. I have to figure this out for them. The family history is scary including my own. Multiple family died from sudden soft tissue rupture including colon and heart. I've been so poor my whole life that I suspected they didn't see a profit in helping me.

[@Misslynettelee]

Also had complications with both my kids, one I spontaneously started bleeding right around the time I was due so they took me in and couldn't believe how much blood I was having despite only a partial amniotic rupture. I'm lucky I survived. Both my babies had troubles after they were born, failure to thrive, severe GERD, etc. NOBODY helped us. We were on government assistance and had to fight for every bit of scrap we got. We are doing better than ever and I'm not letting this go. Maybe it will cost everything to get it figured out. So be it.

[@lorainemc4216]

❤❤❤

[@mariasoliz1487]

I been living with these symptoms my entire life and no one has put it together

[@mariasoliz1487]

I truly wish that doctors know more about this

[@patriciascheri4910]

Love this I have had 3 placenta previas all born early 6 weeks 4 weeks first 2 children Last child bled at 25 weeks Then bed rest till I started bleeding out at 31 weeks ( grateful I knew something wasn’t right so I was at hospital already) And other features Recieved a HEDS DX’s But still question the vascular I’m in NH And do not have geneticists up here I had a large bleed ( with large blood clots ) at 16 from tonsillectomy Thin lips translucent skin younger almond shaped eyes with thin narrow nose bulbous at end Where can I go so I don’t feel gaslit To get this gene tested Can I have my regular doctor or my neurologist order the vascular col gene? I worry about my son as he is symptomatic and is alcoholic from pain he has had for very long time? Please help

[@KBB-nf1dr]

It’s a sliding scale syndrome, my child has both hypermobile & vascular but not as bad as others

[@beenjammin8581]

wow thanks for sharing!

[@mariasoliz1487]

Even though im Hispanic you can see through my skin. Especially in my legs and arms. Stomach too.

[@mariasoliz1487]

Huh. I have had a TIA stroke. Then they did an MRI, and they found an aneurysm on the right. 6 months later another MRI. Found on on the left. Plus I had brain surgery for the artillery veins that were too large around my cerebellum. They put spacers

[@dianeculverhouse6979]

Could vascular EDS Children be treated under the umberella of haemophilia Patients when admitted to accident and emergency,eg using the same team And highlighting urgency of treatment and support for the parents,care giver.

[@JanainaBrognoli]

Great video! Thanks for all these explanantions... About the see thru skin, its only when you can see them on the chest and back? If it is on the arms and legs, then is not vEDS?

[@KBB-nf1dr]

Do you think this is linked to Brugarda syndrome? My late husband had hypermobile EDS and history of sudden heart deaths in his family.

[@BeatheGoth-uk5tj]

Question: I’m a 45 year old Norwegian woman. I don’t know what subtype I’ve got. The specialist in connective tissue syndromes in my hospital( which is a university hospital )said she was sure I had Veds, because I had most of the clinical sympthoms. But since the answer of the genetest in 2004 was unconclusive, I was given both «unknown subtype «, « hypermobile subtype « and classical like» during 3 different visits to 3 different specialists in Genetic Medicine. But now , after almost 20 years without any genetic testing or any controlls, they called me to come to an appointment, in october 2023. I took several blood tests and a skin biopsy, and now I’m waiting- again- for the answers. My bloodvessels are extremly fragile, it’s almost impossible to get a cannula catheter into my veins because they burst when they flush them, even if they are super careful. I bruise and bleed easier too. I’m hypermobile, a lot, but as you know there’s yet no genetic markers for hypermobility eds. I’m 8/9 on Beighnton and I’ve also had a bleed in my stomach artery just 2 months after being diagnosed with EDS( hypermobile) in 2005. I was diagnosed with unknown Ehlers Danlos Syndrome in march of 2004. I don’t know what to do anymore, and I would love to have a right subtype( unless it’s really the hypermobile subtype that’s the correct one). Even putting in a piccline went wrong, the large vein burst inside my arm and the Anesthesiologists were baffeled.

[@teresareinert8271]

I’ve suffered several veins bursting while trying to sedate me. Once I woke up during back surgery. They had trouble sedating me to put a port in, but at least I have one now. None of the Drs had any direction to send me into figuring out why. I got on the net and I discovered I may have EDS with all my loose joints and dislocations. I’m waiting on my first geneticists appointment. I’ve always bruised easily and am very fair skinned so didn’t think to much about being able to see some of my veins. I’m hoping that I can get some help with this.

[@ADavee-Lomax]

Sleeping with eyes open is actually called nocturnal lagophthalmos

[@annab13]

In general, or associated with this condition?

[@mariasoliz1487]

Omg. My feet look like that too. One of my feet is crooked. I wear out my shoe in a weurd way

[@KBB-nf1dr]

Do you think taking creatine would help

[@bobbiejeanbreedlove5022]

cps at hospital was always on top of my mom. indidnt get Dx til 37yo

[@oliverbird6914]

Can this be treated with crispr

[@melissafarrugia9531]

Crisper’s used in a lot of diagnostic methods.

[@oliverbird6914]

@@melissafarrugia9531 hoping at some. Point it's used for treatment

[@annab13]

When certain bad diets are introduced to chickens, this can have an affect on the quality of the shell and chick's...

[@rosalbadelriogarcia9598]

*mousy narrow lower jaw*

[@KimikoMaui]

I thought the person talking was a child! Until she mentioned her husband.

[@melissafarrugia9531]

Young in the face, old in the hands, a common indication.