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Thread: Von Recklinghausen Disease: What are the prospects for a cure?

  1. #1

    Von Recklinghausen Disease: What are the prospects for a cure?

    A person recently wrote to me to ask if she could ever walk again. She has Von Recklinghausen disease or neurofibromatosis type 1 (NF-1), a genetic disease that causes tumors along the central nervous system, scoliosis and other curvatures of the spine, and other neurological deficits. http://en.wikipedia.org/wiki/Neurofibromatosis_type_I

    I wrote back and said that I believe that the therapies that we are currently working on for spinal cord injury will be applicable to patients who have paralysis from other causes, such as neurofibromatosis. She responded, asking if there are doctors that I can refer her to and treatments that I would recommend. I told her that such therapies are not yet available but I believe that they will be.

    Von Recklinghausen's disease present two additional problems that must be addressed in addition to restoring fucntion. The first is the orthopedic problems associated with the disease. Most people with neurofibromatosis develop scoliosis or other curvatures of the spine that require orthopedic correction. The second is that the tumors that is often associated with the disease. Both of these issues can be corrected with careful and limited surgery.

    I suggested to her that we continue our discussion here in this forum where I can take more time to describe what will be required to address these problems.

    Wise.

  2. #2
    Thanks, Wise. I have had a number of clients with neurofibromatosis as the cause of their SCI, over the years. It is good that attention is being paid to this disease as a cause of SCI, and possible cure therapies down the road. Both of my clients had extensive ortho-spine procedures; once for a severe gibus (the worst I have ever seen) and the other for a severe scoliosis, both had their diagnosis and treatment as adults.

    (KLD)

  3. #3
    Super Moderator Sue Pendleton's Avatar
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    Last fiscal year the DoD had a research call for new funding to go before peer review for neurofibromatosis. It is occasionally caught in those with minor symptoms during enlistment physicals but normally the DoD deals with it as a family member medical problem that can be very expensive.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  4. #4
    Moderator jody's Avatar
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    Dr paul Mcormick NYC 212-305-7976

    did surgery on a friend who had tumor removal and rods for scoliosis. she has this condition. she is walking now. I know her from the Philadelphia folk fest. he was highly recommended by another surgeon.

  5. #5

    Von recklinghausen - any contact in us for nf1

    Dear Wise,
    Thanks for the time you've taken to answer me back and share my story with other people. I'm really touched !
    May I ask you if you can focus me to a NF1 specialist ? I want to contact a specialist in order to send him my medical record and to know if I can come to meet him.
    My wish is to be followed by a specialist in NF1 who can give me a medical advice about my case.
    Thanks a lot for your help, and I'm available to answer any questions if you need.
    Linda Djouani

  6. #6
    Hello,

    Could you please help me ?
    I want to contact a NF1 specialist to transmit my medical records and ask for medical advises.
    I tried unsuccesfully to contact Dr Paul C.McCormick.
    Do you please have a name, an email for me ?Thanks,
    Linda



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