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hi there
i am curious to know if anyone had has the opportunity to meet or have contact with Dr. Knapp in Holland??
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Dr Knapp
- By zoe4manaia-rain
- Posted August 4, 2009 at 5:31 am · 9 replies
- In Other leukodystrophies
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- By MLDdad
- Posted August 4, 2009 at 10:17 am
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Greetings,
Her name is Dr. van der Knaap. She is a well respected, very pleasant and approachable researcher who does a lot of work with undiagnosed leukodystrophies. She is usually open to working with your local neurologist and often reviews MRI's that they send to her.
Her contact information is at the bottom of the page at:
http://mldfoundation.org/doctors.html (she is not really a MLD doctor but they must get quite a few inquiries about her)
- By zoe4manaia-rain
- Posted August 5, 2009 at 5:43 am
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hey there
thats great thank you for your reply, we are currently awaiting to hear from her to see what she thinks of our daughters MRI scan.
she has been diagnosed with leuko but we dont know which one it is, u am praying she can give us some answers.
again thank you for you reply
- By ClydesMomandDad
- Posted August 5, 2009 at 7:55 am
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We are waiting for something to be discovered. Ryan has undiagnosed Leukodystrophy but she is calling what he has Hypomylelination with hypodontia. He has a very happy life as you can see by the picture above. Dr. van deer Knapp has already reviewed his info and has processed DNA from him and myself and his dad.
Best wishes.
- By Janet7
- Posted August 6, 2009 at 9:41 am
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Dr. Marjo van der Knaap comes to our July conference as is very involved with the ULF. Please e-mail me at Janet@ulf.org and I'll give you her e-mail address.
- By myjoshiebaby
- Posted August 12, 2009 at 10:03 am
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I had the pleasure and honor to meet Dr. van der Knaap last month at the ULF seminar. Let me say that she speaks to you like a human being, and not like a cold doctor. She restored a lot of faith and hope in us. Please contact the ULF and they will help you get in touch with her.
Good luck and many blessings to you and your family
- By zoe4manaia-rain
- Posted August 12, 2009 at 3:25 pm
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awesome, lucky you, i have been able to email her and she has replied which is just amazing.....
she is awaiting our daughters MRI pictures to give us her opinion and my little girl is undiagnosed, i do hope she recieves them soon, thank you for your message x
- By Nolans
- Posted August 15, 2009 at 11:11 am
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I met Dr. Van der Knaap at the symposium in July and consider the meeting to have been very positive, even if the prognosis for our 19 year old is sad. She was very approachable, responsive, caring and straightforward.
- By varna
- Posted October 20, 2009 at 5:49 pm
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My son was eventually diagnosed by his group of Drs. and was given a diffinate diagnosis of LBSL ...it took nearly 20yrs. but we got a name for his leukodystrophy.
- By goodo
- Posted November 13, 2009 at 10:04 pm
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hi
have you got the results back from dr van der knapp?
we have sent jacobs mris to her and still waiting for results
which they stated could take 3 months, the waiting is so painfull. jacob is doing so well at the moment starts 2 half days at pre kindy after xmas, (with a teachers aid)if all goes well
thanks goodo
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