Incontinentia Pigmenti Community
A Doctor network that has a clue
About This Community:

This patient support community is for discussions relating to incontinentia pigmenti, genetics, and breast, dental, eye, hair, nail, nervous system and skin problems.

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A Doctor network that has a clue

I am a 37 year old Women with IP. My 14 yr. old daughter also has IP. I have spent my whole life explaining the problems we have faced to doctors. I would love to find a list of doctors who have knowledge of IP. 98% of the time I am the one informing the doctor, dentist, opthomologist of what IP is. And either they get scared by it or ignore my concerns. It is frustrating and has resulted in my faith in doctors. Does anyone know of a list like this? A Nation wide list for people to reference.

Hopeful,
Tiffinay
Avatar_f_tn
There is no list that exists, to my knowledge, that is of physicians who are familiar with IP.  If there is a specific concern that you have about a particular symptom and you let me know where you live I will try to assist you.  However, if your daughter is having dental problems it does not require a dentist familiar with IP to get proper treatment.  The same holds true for other symptoms.  However, on the web site www.ipif.org you will find a bibliography of articles written about IP for medical journals.  Print it out, show it to all you daughters medical providers and if they, or you, wish to read any of the articles they need only to contact me and I will send them out at no charge.  This is a good way for physicians to learn about IP.

If you have any aditional questions please call me.
Susanne Emmerich
Exec. Dir. IPIF
212 452-1231


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