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Schwannomatosis

What is Schwannomatosis?

Schwannomatosis is a rare disorder affecting the peripheral nervous system where benign tumors called schwannomas grow on perippheral nerves.

 

Schwannomatosis is a rare disorder affecting the peripheral nervous system where benign tumors called schwannomas grow on perippheral nerves.
Acknowledgement of Schwannomatosis has not been added yet.
Prevalence Information of Schwannomatosis has not been added yet.
Synonyms for Schwannomatosis has not been added yet.
Cause of Schwannomatosis has not been added yet.
Symptoms for Schwannomatosis has not been added yet.
Diagnosis of Schwannomatosis has not been added yet.
Diagnostic tests of Schwannomatosis has not been added yet
Treatments of Schwannomatosis has not been added yet.
Prognosis of Schwannomatosis has not been added yet.
Tips or Suggestions of Schwannomatosis has not been added yet.
References of Schwannomatosis has not been added yet.
schwannomatosis Created by jollyjane
Last updated 6 Oct 2010, 10:09 AM

Posted by jollyjane
6 Oct 2010, 10:09 AM

I have recently been diagnosed with schwannomatosis and I am interested in talking to other people with experience of this condition. I am in England and so far I have found the condition is not well known. Fortunately we have two expert centres here, one in Manchester and the other at Guy's Hospital in London. I have an appointment at Guy's in 2 weeks, to meet Dr Ros Ferner. I am scheduled to have surgery to remove a sciatic schwannoma at the Royal National Orthopaedic Hospital at Stanmore. I am interested in talking to anyone else with this condition, especially their experience of monitoring of their condition and prognosis.

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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.

  1. Complete the screening form.
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  3. Answer the permission and data sharing questions.

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.

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I was diagnosed with Schwannomatosis in 2000. I have had many tumors removed the first one the day after my 27th birthday. I have never met anyone else with this illness, feels very lonely.
I was diagnosised with Schwanommas recently in September this year and am in the beginning stage of finding out the process of this disease.
Just on verge of being diagnosed with schwannomatosis. All internal tumors mostly arms and few stomach and back. Chronic paim since teen and been tossed from dr to dr for years. Just recently saw...
I was recently diagnosed with Secondary Adrenal Insufficiency as well as Exercise Induced Anaphylaxis. Being active, staying in shape and playing sports are a huge part of my life, and part of my...
I am a full time studio artist, on my feet most of the day - with recent severe pain that's like an electric shock. After the doctor visits, MRIs, and one opinion as to what I should do, I know I...
I am a 51 year female with a long history of nerve tumors. My first one was at 12 and they haven't stopped coming. Since then, I've had them removed from my head to my feet. The spinal ones are the...

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schwannomatosis

Created by jollyjane | Last updated 6 Oct 2010, 10:09 AM


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