About Saul Wilson Syndrome

What is known about Saul Wilson Syndrome?

The medical diagnosis is called Microcephalic Osteodysplastic Dysplasia, Saul-Wilson type.  Saul Wilson is a rare skeletal disorder.

Right now there is not a lot of information out there on this type of dwarfism and I am helping write this syndrome.  Everything medical I go through is documented for this dwarfism.

Recently there have been 14 confirmed cases of Saul Wilson Syndrome.  I have learned of 7 males and 4 females (myself included) with Saul Wilson.

Symptoms of Saul Wilson Syndrome include:

  • Small head
  • Prominent forehead
  • Prominent eyes
  • Flat cheek bones
  • Narrow nose root
  • Beaked nose
  • Cataract
  • Cone-shaped epiphyses
  • Short digits
  • Small hand
  • Clubfoot
  • Short stature
  • Underdeveloped odontoid process
  • Vertebral abnormalities

My goal in making this website is to learn more about my dwarfism and to make public any knowledge that I gain.  Aside from a few medical journals written this is the first time ever that anyone has gathered information on this syndrome.

I can’t wait to share what I learn with all of you!

19 Responses to About Saul Wilson Syndrome

  1. Larry Hagy says:

    My son was the first diagnosed with Saul-Wilson Syndrome. The syndrome is named after Dr. Saul and Dr. Wilson while they were both at the University of Virginia Medical School. Dr. Wilson is still there and Dr. Saul, the last I heard, was at Tulane.

    Bryan is 38 years old, still going as best as he can, doesn’t talk but he does vocalize.

  2. Justin Brubaker says:

    Both of my boys were diagnosed with Saul-Wilson today. They are 8 years old and 4 years old. It took a very long time for the diagnosis.

  3. Hi there…

    A little 10 years old boy named Piet from Denmark got this disease to.

    He’s such a pretty lovely little boy.

    Tv2 Denmark has followed him and his family and send his story on tv soon…

    The doctors I Denmark didn’t know the diagnosis for a long time, but today they know it’s the Saul-Wilson syndrome…

    Looking forward to following Piet and his family.

    Wishing you all a wonderful life

    Hugs from Dorte

  4. M. Hertz says:

    There is a boy in Denmark with Saul-Wilson Syndrome named Piet Kyndesgaard:
    http://livsstil.tv2.dk/2018-08-12-laegernes-store-mysterie-her-er-historien-om-den-danske-dreng-piet
    (The article is in Danish, but maybe you can translate it in Google or something?)

  5. Kristoffer says:

    Danish television is doing a series with children with rare diseases. One of them is Piet with Saul Wilson’s syndrome.

    http://livsstil.tv2.dk/2018-08-12-laegernes-store-mysterie-her-er-historien-om-den-danske-dreng-piet

  6. Sandra Lykke Möller says:

    There’s a boy in Denmark recently diagnosed with this.

  7. Mst says:

    Just read about a Boy in denmark

  8. Ronni says:

    Theres this great kid from Denmark aswell

    https://youtu.be/7ImUdRS_VpY

  9. Carl Emil says:

    A danish boy was just diagnosed with Saul Wilson syndrome – danish television made a small documentary series about him and children with other rare diseases 🙂 he seems like he really enjoys living life – cracking jokes and having a great personality.

  10. Sebastian Johansen says:

    Right now a danish television show is going on about kids with very rare sicknesses or syndroms, and a little cute boy called Piet about 10 years old also has it and they just found out few months ago because it was so rare and special, but im happy to hear that your speciallity as i would like to call it, has a good ending.

  11. a little guy from denmark has it aswell he is on television at the moment he is called piet

  12. J says:

    Hi,

    There is a boy in Denmark who recently got this diagnosis. He was in a tv show with people that have very rare diseases. His name is Piet and the show is called De Sjældne Danskere (The Rare Danes).
    I hope you can use this info <3

    • littleperson123 says:

      Thank you to everyone who has commented and told me about Piet, and yes I have been in contact with him and his family.

      • Karin says:

        Thank you for your sharing.
        Being aware by now that Saul Wilson dis-ease is a kind of dwarfisme, which in its nature must make for a different life in many regards, I’d like to know if those about 14 beings with other human-species combinations than the species in general have, may have special areas in life where they excel in their different-ness like being extraordinarily kind, brilliant in some area or other, a particular combination-skill, other attitudes or other psychological insights?

        • littleperson123 says:

          Doctors have noted that several of us seem to have very positive and bubbly attitudes. No matter what I have gone through my positive attitude has helped me through everything. Everyone I meet tells me I have a very positive attitude and that I’m always laughing and smiling.

        • littleperson123 says:

          Also I want to say that since I was diagnosed at age 5 with Saul Wilson Syndrome I have known it was a type of dwarfism, however doctors didn’t have the gene or know anything about it until just recently. We are at the beginning of finding out what we need to know about Saul Wilson Syndrome.

Leave a Reply

Your email address will not be published. Required fields are marked *