What is Arthrochalasia Ehlers-Danlos Syndrome?

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In this video, I stray away from my usual hEDS content to talk about Arthrochalasia EDS (aEDS). This is part of a rarer subtype series where I make a video dedicated to each of the 10 rarer subtypes of EDS.
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Thanks for watching!

Опубликовано:

15 окт 2024

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Комментарии : 19

@ehlersdanlosandi 4 месяца назад

Do you or anyone you know have aEDS? How and when were you diagnosed?

@stephenblonder9634 4 месяца назад

Yes I am a 48 yr old male with Arthochalisa Ehlers Danlos. How ever I am the only person in our family from either Mother's or Father's side that has it. My brother whom is in U.S. Military doesn't have it or any symptoms of it. Thank u again for making these videos. Stephen Blonder from Middle Tennessee

@ehlersdanlosandi 4 месяца назад

It's an honor to meet you, Stephen! Thanks for watching!

@stephenblonder9634 4 месяца назад

Please keep making videos they are very informative

@ehlersdanlosandi 4 месяца назад

@@stephenblonder9634 I definitely will!

@shannongreenwell1278 4 месяца назад

I’m a cEDS zebra from the same area.

@stephenblonder9634 4 месяца назад

@shannongreenwell1278 where are u at?? Would like to maybe meet up sometime also if interested we do have a Ehlers Danlos group that meets in Lebanon, TN on the 3rd Sunday of the month

@kristilay8280 4 месяца назад

Yes... I think my daughter might! She had bilateral subluxation of her hips and had major surgery on both at the age of 3. It's been quite a challenge for her and as a mom I feel helpless to help her. 🙏🏼

@ehlersdanlosandi 4 месяца назад

Being a loving, supportive parent and a medical advocate for her like it sounds like you are, is such a huge help!

@shannongreenwell1278 4 месяца назад

My friend Shannon has aEDS, and she is trying to take care of her son who has Gillian Barre syndrome.

@ehlersdanlosandi 4 месяца назад

She sounds like a woman with her hands full!

@shannongreenwell1278 4 месяца назад

@@ehlersdanlosandi she is, she was with him the whole time he was in hospital and in rehabilitation hospital at the same time my dad was there. However my dad left before he did. He was still there when my dad died.

@HStaecker Месяц назад

My sister has type 7a

@Flipout4Chris 4 месяца назад

Please don’t reinforce double jointed as medical terminology. It’s a poor misnomer for hyper mobility. To be double jointed that would require additional joints. Love your content otherwise.

@ehlersdanlosandi 4 месяца назад

I'll consider your concern in future videos.

@charlottestandage2765 3 месяца назад

Though I agree that double jointed isn't a medical term, the term double jointed is also used in medical terminology because it makes the term hypermobility more accessible to laymen patients. I for example call myself double jointed and I'm a biomedical scientist...but I understand it doesn't mean to have two joints...it just makes explanation of hypermobility to others more accessible to them. The term double jointed is also used in the questionnaire used to determine the presence of joint hypermobility. Xxx

@ehlersdanlosandi 3 месяца назад

You gave me a great idea for a video topic! I decided to do one about the term double jointed - where the term comes from, what it means, and, of course, that it doesn't mean we have two joints where we should have one. Thank you for the inspiration!

@charlottestandage2765 3 месяца назад

@@ehlersdanlosandi I can't wait to see this episode!!! Medical terminology can be difficult to understand sometimes. I didn't understand the term "Frank joint instability"... Then it suddenly hit me... It means "obvious joint instability" 😂... Why couldnt the researchers use the word "obvious" 😂! Anyway... Looking forward to this episode! Xxx🥰

@ehlersdanlosandi 3 месяца назад

@charlottestandage2765 The most difficult medical terminology for me to learn hasn't been the actual words themselves, but rather the massive amounts of abbreviations we use! There's so many!