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Acer Therapeutics Obtains Exclusive License to Celiprolol Pivotal Clinical Data from AP-HP
“We have studied celiprolol for nearly two decades in vEDS patients and this is the only drug ever to demonstrate a clinical benefit in a randomized, controlled clinical study,” said Pierre Boutouyrie M.D., Ph.D., co-director of the clinical pharmacology service at the Georges-Pompidou European Hospital AP-HP and Principal Investigator for the celiprolol
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Genetics of Ehlers-Danlos Syndrome
We are planning to collected blood and saliva for DNA extraction to use for genetic testing of children and adults with EDS and their relatives. Medical records from other institutions and clinical notes for visits in Dr. Holick's clinic will be reviewed to obtain the following information: previous diagnosis at other institutions, age, clinical signs and symptoms of EDS, Joints Hypermobility Syndrome (JHS), , an
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Genetics of Ehlers-Danlos Syndrome
We are planning to collected blood and saliva for DNA extraction to use for genetic testing of children and adults with EDS and their relatives. Medical records from other institutions and clinical notes for visits in Dr. Holick's clinic will be reviewed to obtain the following information: previous diagnosis at other institutions, age, clinical signs and symptoms of EDS, Joints Hypermobility Syndrome (JHS), , an
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Two sisters, 7 and 9, signed national letters of intent, inking contracts with Northern Kentucky University’s volleyball team.
Taylor Conrad and Leah Conrad, of Florence, were presented with jerseys on Monday for the upcoming season. They signed their letters in front of a packed room of family, friends and
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Ehlers-Danlos syndrome affects connective tissue, primarily the skin, joints and blood vessel walls.
Symptoms include overly flexible joints that can dislocate, and skin that's translucent, elastic and bruises easily. In some cases, there may be dilation and even rupture of major blood vessels.
Treatment helps manage symptoms and monitor for complications. Options include drugs, physiotherapy and sometimes surgery.
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I claim my #31st Human Right
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I claimed my right!
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I joined!
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Join the movement to get control of your healthcare data. All it takes is downloading a free app! https://hu-manity.co/download/oneedsvoice
Share a screenshot in rareCourage showing that you claimed your 31st Human Right and get a $5 Starbucks gift card (limit 1 per member)!
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I just declared my data as my property, and you can too. Check out the #My31 app to claim your right.
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I just declared my data as my property, and you can too. Check out the #My31 app to claim your right.
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Fui diagnosticada cm SED hipermóvel no ano passado! Meu histórico, muitas fraturas no pé esquerdo, quatro costelas e clavícula! Tenho 55 anos e sequer tinha ouvido falar nessa síndrome! Fui diagnosticada por um reumatologista de São Paulo. Sempre tive muitas características da SED, porém, mesmo passando por mais de trinta ortopedistas, apenas um único médico na primeira consulta comentou no exame clínico sobre a síndrome e ele estava …Read more
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Excelente tarde a todos!
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Hi.. I am new here.. looking to commiserate with fellow Zebras.. am 67 and diagnosed 6 years ago due to granddaughters diagnoses.
Looking back thru my lifetime, there were many clues. My mother, a nurse tried so hard to find out why my legs hurt so bad. I have 8 grandchildren and 6 have EDS to varying degrees. I have one daughter and one son. Daughter has it for sure and son has signs but does
Not want to believe it and is not very affected.
Bo…Read more+ care 4+ hugs2+ thanks0+ prayers0+ care 4+ hugs2+ thanks0+ prayers0-
Brittany Billow
Love for the family. Y'all hang in here!!
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Maux
Hi! Welcome! I am 66 so, we are in the same demographic. I am a grandma, too. I was dx after daughter. Then we found out my first cousin also has EDS-Classic and is a medical doc, too. So, we have exchanged stories and medical experiences. It explains a lot for me too. I also have Mast Cell Activation and Dystonia, among other things. It had been hard to find Docs who know enough to diagnose or help but, I have formed a little 'team' and I hav…Read more
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flowerfloosey
Thanks for your reply.. no I live in Northern Calif. I was diagnosed by pediatric geneticist . We all went there together with my granddaughter when she was ten. She had been seen by the same dr as a newborn so time and space was in our favor.
Two of my grandchildren are very affected. The doctor I have seen for years has done all the right things to care for me all these years, even without a Dx.
At this point in my life, I have had both hips r…Read more
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Maux
Thanks for the follow-up. I went to see a Pediatric Geneticist, too. She helped me sort out more than the EDS-Classic. My husband and I both have rare ectodermal dysplasia genes and passed them along to our daughter, unfortunately. That has made her diagnosis more tricky. She is missing 9 teeth and has to have so much dental work..I never even had to were braces but, I am missing 6 teeth. My docs haven't really helped me much but, I do okay on …Read more
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I am new in here. I needed zebras/spoonies in my life, because I got lonely for just talking to people "who don't get it".
Spoons and love from Norway. ❤️💕
If you wanna talk or need somebody. Just contact me. I am really good at making people feel better about them self.+ care 8+ hugs3+ thanks2+ prayers1+ care 8+ hugs3+ thanks2+ prayers1-
naomirps
I’m always happy to connect & help...
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Norwegian Zebra
Good to know. 👍Hi!😊 This week I am finally starting to feel better after a forthnight of being low on energy and with that classical "influensa-like" EDS-ht feel. 24/7. It is lovely to function again. ❤️ But then is it time for the"try to do as much as you can of all those things you should and at the same time pace my self so I don't crash again" game. I live just outside Oslo, the capitol of Norway, with my te…Read more
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Madora Pennington
Nice to meet you.
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Maux
Hello from Washington, DC! I never made it to Norway but, I did try to get there a long time ago! However,
I just discovered the 25x Norwegian ancestry in one of my maternal lines..I'm apparently a direct descendant of the Norwegian kings of Dublin. Before this, I had a genetic test that told me the most people sharing my genes live in Norway but, I didn't know how. Do you have a large population of EDS patients there? Just wondering! - Maux -
Norwegian Zebra
Hello "Fellow Norwegian"" 🙂
It is hard to say if there are lot of patiens with EDS here, cause as good and wonderful as the norwegian health care is compare to everywhere else ( it is mostly free forexample), Doctors here DO NOT understand EDS-ht, I am sad to say. So it must be many, many people who is misdiagnosed/underdiagnosed.
I got diagnosed at 27, I am now 41. And the first one who diagnosed me was a kiropractor. She saw it right awa…Read more
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Hi Guys!
Just got back from the University of Utah where they're opening this month an EDS CLINIC!
So blessed for that app. going back in 2-3 months to work with a group of 15 doctors, 3 physical therapist, 1 occupational therapist, a geneticist, and a POTs specialist!! They're also sending me to the wheelchair clinic to help me in that department.HUGE TEAM!!
I feel so blessed and gifted that after 4 years! I finally will have a team! just w…Read more+ care 4+ hugs1+ thanks1+ prayers0+ care 4+ hugs1+ thanks1+ prayers0-
Ceelee Choiligh
Interested in learning about the clinic. What is name? Where located? Why went(e.g. diagnosis &/or treatment support)?
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Brittany Billow
Hi! the clinic is at the University of Utah in the rehabilitation clinic. You'll need a referral to get in to see Dr. Micheal Green. I go at the end of this month to the actual clinic and by then I can provide you with more information! I'm scheduled to see 10 doctors in 3 days!!! ex: geneticist, neurologist, GI, Autonomic, 2 physical therapists, 1 occupational therapist, and I know I'm missing a few forgive my brain. Can I answer any more que…Read more
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flowerfloosey
That is awesome news!! Not been much in the West until now!!
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Brittany Billow
Such a huge blessing!
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Brittany Billow
Hi, Y'all! Utah was a very busy trip! 10 doctors in 3 days... WE MADE IT! While Utah isn't accepting new patients at the moment, I would suggest you get on the list! I hope everyone is doing there best, much love for you all!
If you have more questions please DO NOT be afraid!
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Understanding Ehlers-Danlos Syndrome Hypermobility-Type and Joint Hypermobility Syndrome
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Hi! Thank you for letting me join oneedsvoice.
I’m from the Netherlands and have to say: we are way behind if it comes to eds. So I’m glad there is a platform like this where I can find info and fellow zebras!+ care 1+ hugs1+ thanks0+ prayers0+ care 1+ hugs1+ thanks0+ prayers0-
Norwegian Zebra
Hi Noemi.
Here in Norway we are also way behind. I always get depressed after reading at norwegian sites. They only say we are really bendy, and we need to excersise. And sometimes we are in a little pain. They don't talk about adrenaline, Potus, brain dog, the severity in the pain and so on. So I am also glad to have find this page. 😊👍
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A 19-year-old sportsman experienced a right-sided pneumothorax and hemoptysis after having had an intermittent cough and blood-tinged sputum for 2 months. A chest CT scan revealed small cavitary lesions in both lungs. The relapsing pneumothorax was treated wi
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Hey zebras!
I was going to post this yesterday but I've been way to emotional! LOL!
I'll catch y'all up from the beginning of the month, I had an appointment with the cardiologist, Dr. king, at the University of Utah. This appointment was for my POTS... found nothing they don't know what's happening with my heart. However when I was there they asked a lot of questions gaining more information on my case. Its wild to have a doctor take notes.…Read more+ care 4+ hugs2+ thanks0+ prayers0+ care 4+ hugs2+ thanks0+ prayers0-
Dawn
Great news. What is Dr. Greens first name? Hopefully the U will not make him leave the way they did Dr. Ball
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Brittany Billow
Dr. Michael M. Green. He's supposedly has the most knowledge on eds in the west coast, ILL GIVE IT A SHOT! What happened with Dr. Ball? I'm so excited.
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Robot Helps Young Girl with Ehlers Danlos Syndrome Experience the Outside World
A rare genetic disorder often prevents 17-year old Jade Gadd from leaving her house. Denied the life most girls her age take for granted, she’s unable to go to school regularly or socialize, leaving her feeling very isolated. This year though, her school attendance is up thanks to a robot she affectionately named “Bee.”
“When I saw her for the first time, I
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Genetics of Ehlers-Danlos Syndrome
We are planning to collected blood and saliva for DNA extraction to use for genetic testing of children and adults with EDS and their relatives. Medical records from other institutions and clinical notes for visits in Dr. Holick's clinic will be reviewed to obtain the following information: previous diagnosis at other institutions, age, clinical signs and symptoms of EDS, Joints Hypermobility Syndrome (JHS), , an
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PCORI-funded Ehlers Danlos Comorbidity Coalition Meets for the First Time In-Person
The Ehlers-Danlos Society was approved for a $50,000 funding award by the Patient-Centered Outcomes Research Institute (PCORI) to support a project to develop an Ehlers-Danlos Comorbidity Coalition.
The Ehlers-Danlos Society is using the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of patients, researchers, and othe
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The European Ehlers Danlos Syndromes conference
We are very excited to bring together leading world experts to discuss Ehlers-Danlos syndromes and related disorders, including the newly-described hypermobility spectrum disorders. This is our first European conference and we look forward to meeting experts and those affected by these conditions from across Europe.
We hope to see you in Maastricht.
The local organizing committee of Henk Kloos
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A Novel in Vivo Skin Extensibility Test for Joint Hypermobility
OBJECTIVE:
The stress/strain curve derived from stretching skin is not linear, but follows a J-shaped curve. An initial generous yield is followed by a steep linear phase where considerable additional force is required to achieve modest increases in deformation. The former represents the taking up of slack resulting from the alignment of dermal collagen bundles in the line of force,+ care 0+ hugs0+ thanks0+ prayers0 -
Surviving Ehlers Danlos One Page at a Time
As a child i was about as clumsy as they came and 'double jointed'. I also suffered from strange but intense pains that would send me screaming to the ER, only for them to be called 'growing pains' and to be sent home still in pain. As I got older they only got worse and my parents began to believe that I was a bit of a hypochondriac. Around the age of 15 I started to have intense pains in my right knee a
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Dr Adam Farmer was educated at Stonyhurst College in Lancashire. He undertook his medical training at University College London, qualifying with the degrees of MBBS BSc (Hons) in 2001. He became a member of the Royal College of Physicians in 2004. Subsequently, he undertook his specialist training in gastroenterology and general medicine in the West Midlands before moving to the Wingate Institute of Neurogastroenterology,
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Dr. Neilson studies genetic contributions to the disorder acute necrotizing encephalopathy (ANE), in which children are predisposed to devastating neurologic injury following common infections. Research involving families with recurrent ANE has revealed a candidate gene which is now being studied in mouse and cellular models.
Education:
BA: Biology, Johns Hopkins University, Baltimore, MD, 1993
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Hi all!
This sounds like a great place to be as a Zebra.After an upright MRI and 3d rotation CT scan a neurosurgeon said Cranio Cervical Instability and brainstem compression..and the only solution is a fusion from skull to T1.
I cant find a Dutch neurologist or neurosurgeon for a 2nd opinion. They never saw images from Upright Mri and the y dismiss everything. They dont admit to lack of knowledge. I dont know how to go on from here...the opin…Read more
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Liz Bogaert
I can't help you with a name of a neurologist, but have you considered going to Belgium? Dr. Malfait is in UZ Gent and an EDS specialist (rheumatology and genetics) and may be able to help you find the specialists you need. Most Dutch health insurances will cover your visit there. Good luck!
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Has anyone here developed a CSF leak from hEDS?
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marmiemama
I had a fusion of L4/L5 in December of 2016; didn’t know yet I had EDS. Day 3 after the surgery I developed a CSF leak which kept me in the hospital another 8 days. My surgeons were both baffled about the leak, they were both very careful and it was so unusual to develop one so far out from surgery. Within 7 months I got the hEDS dx and one of the first things my surgeons said was, “ohhhh, the leak! That explains that.”
Never had a spont…Read more -
flowerfloosey
No but I have abnormal CSF that looks like MS but I do not have MS
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I can remember as a kid my fingertips would start to peel from under the nail, and go to the fingertip leaving them raw... I thought I grew out of it because I hadn't had it for at least 10 years.
Well zebras its back.. Do you think it has to do with EDS? and can I do anything more the moisturize?+ care 3+ hugs0+ thanks0+ prayers0+ care 3+ hugs0+ thanks0+ prayers0-
Littlehippieali
This happened to me for about a year a few years ago and then went away. We never figured it out. It's happened to my son once as well.
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Sara Waldrip
Could it be related to Mast cell activation? My nails and cuticles peeled until I started treatment for it
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Brittany Billow
Doctors just mentioned mast cell activation disorder. I'm going through 65 tests and will receive the results in January when I travel back to the clinic. I will have to remember to mention this next time.
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Brittany Billow
Guess who was diagnosed with Mast Cell Activation. However, they say that does not diagnosis does not match the MCAD
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Hello zebras,
I was wondering how many of you are diagnosed with EDS and POTS? And if you could assist me with learning about the medications they're choosing from.
We found a nice doctor, and he was very honest by saying "I dont know alot about EDS and POTS so i am going to rely on your research." i admire the fact he said that.
He gave a choice of Northera (which is a new drug) and Midodrine (the older drug).+ care 3+ hugs1+ thanks0+ prayers0+ care 3+ hugs1+ thanks0+ prayers0-
Victoria Graham
Brittany Billow
YES! There are a lot of people who have, both, EDS and POTS. They seem to go hand in hand quite often and sometimes are symptoms seem to be a case of “the chicken or the egg” when it comes to EDS/POTS.
There isn’t a ton of resources that combine EDS+POTS, but there are some really excellent sources of information on POTS. (I’ll find some and post it when I get to a computer - also, send me a message)
One thing to keep i…Read more
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Will anyone else be at NIH on Thursday for the Rare Disease Expo? If so, come say hi - I will be there all day!
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Robot Helps Young Girl with Ehlers Danlos Syndrome Experience the Outside World wow! How awesome is that? How many of you think this would improve your daily life? comments!?
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