Marden-Walker Syndrome is a rare disorder characterized by a distinct facial expression, a small or receding jaw, a cleft or high-arched palate, growth delay, bone joints in a fixed position and limited control of muscle movement.
why would anyone outside writing.My daughter was diagnosed MWS What awaits us in
hi there im chris i was born with marden walker syndrome to how does it affect everyone else. i developed kidney failure and sleep appnea and undescended testes i also had hypersplasia ( urinate from two places) they removed both of my testes and replaced them with adult prostetic ones.. hence im infertile. my joints i cant straighten and i walk with an unsteady gait. im developing arthiritis in my knees can get quite sore sometimes when walking. i suffer from really bad dizzy spells sometimes (low blood pressure apparently) and all this to do with marden walker syndrome lol wow im 28 now and used to stop breathing for no reason until i grew out of that. if anybody has anymore information please could u email me at email@example.com im from the united kingdom. many thanks ps to mellan you have a beautiful country (america) been to florida and had the best time ever.. god bless you
Hi Lynette, You can reach me on Facebook. Just search MaryEllen Spencer. I'm in Virginia/DC
I am trying to contact the lady that has a daughter with marden walker syndrome both of my kids have mws my son aslo has dandy walker malformation Thanks Lynette Daniel 15 mws and dandy walker malformation Tiffany 12 on dec 9 mws
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
I am looking to met others with marden walker syndrome
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Created by Lynette | Last updated 7 Nov 2009, 01:14 AM
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