Site-Wide Activity |
  • related content
    Profile Photo
    Norwegian Zebra Oct 23 2018 7:54 pm

    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    1
    + hugs
    1
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    Brittany Billow Aug 20 2018 5:12 pm

    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    2
    + hugs
    0
    + thanks
    1
    + prayers
    0
  • related content
    Profile Photo
    angela anu Aug 8 2018 8:31 am

    EDS-H & JHS

    Understanding Ehlers-Danlos Syndrome Hypermobility-Type and Joint Hypermobility Syndrome

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    Noemi Maillé Jul 22 2018 1:10 pm

    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
    + hugs
    1
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    angela anu Jul 11 2018 1:52 am

    https://www.oneedsvoice.com/rarepoll-single/?poll=13

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    angela anu Jul 10 2018 8:07 am

    A 19-Year-Old Man With Relapsing Bilateral Pneumothorax, Hemoptysis, and Intrapulmonary Cavitary Lesions Diagnosed With Vascular Ehlers-Danlos Syndrome and a Novel Missense Mutation in COL3A1

    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

    Read more

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    Brittany Billow Jun 15 2018 4:10 pm

    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
    + hugs
    2
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    RobinoSz_ns Jun 8 2018 7:26 am

    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

    Read more

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    RobinoSz_ns May 23 2018 5:07 am

    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

    Read more

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    RobinoSz_ns May 23 2018 5:05 am

    Ehlers-Danlos Syndrome

    http://m.patient.media/images/om1375a.jpg

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    RobinoSz_ns May 23 2018 5:04 am

    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

    Read more

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    RobinoSz_ns May 23 2018 5:04 am

    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

    Read more

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    RobinoSz_ns May 23 2018 5:03 am

    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,

    Read more

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    RobinoSz_ns May 23 2018 5:03 am

    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

    Read more

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    RobinoSz_ns May 23 2018 5:03 am

    Adam D. Farmer, PhD, FRCP

    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,

    Read more

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    RobinoSz_ns May 23 2018 5:01 am

    Derek E. Neilson, MD

    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
    MD: Oregon Health Sciences

    Read more

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    Noek Zakharious Apr 14 2018 6:08 am

    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

    + care    2
    + hugs
    0
    + thanks
    0
    + prayers
    1
  • related content
    Profile Photo
    Spilledpills Apr 12 2018 6:17 am

    Has anyone here developed a CSF leak from hEDS?

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • rareRelated

  • related content
    Profile Photo
    Brittany Billow Mar 14 2018 4:12 pm

    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
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    Brittany Billow Mar 1 2018 1:15 pm

    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
    + hugs
    1
    + thanks
    0
    + prayers
    0
  • load more