ectodermal dysplasia (hair, teeth and nails)

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single parent in need of help finding way to provide dental implants/treatment for 2 daughters desparately needing treatment for ectodermal dysplasia (one more severe than other). I have no insurance for older child and myself; single disabled mother of 3. I have sent out letters and e-mails to 100s of dental schools, and try to follow up on leads; any ideas? My daughter is seriously in pain, emotionally and physically with no teeth. She just lost her teeth in August of 2006. Now the temporary flipper she has been wearing is starting to hurt her gums. We cannot afford $40,000 to cover the costs of dental work due to husband up and leaving family after 23 years of marriage. I have been a stay-home mom this time; please if you have any ideas, let me know. Thank you. We are in S.F. Bay area.

2 replies

Have you contacted the Department of Social Services to ask if Medi-Cal or Denti-Cal will cover this? When my daughter was an infant and we were in a somewhat similar situation (dad walked, no money, large medical expenses), MediCal came through for us.

http://www.denti-cal.ca.gov/WSI/Default.jsp?fname=Default

If Denti-Cal won't, perhaps Medi-Cal will. http://www.medi-cal.ca.gov/

Good luck!

Hello--
My name is Stefanie--I am the RN at NORD.
Your email was brought to my attention earlier today, but unfortunately I did not have the time to respond to it earlier.

Watch your email messages tomorrow--I will definitely send you info. There is a truly wonderful patient support organization--the National Foundation for Ectodermal Dyspasias . They provide individual grants of up to $15,000/patient, specifically for dental implants for people with this disorder. They also provide loads of advice about dealing with insurance companies.

Their website is www.nfed.org--you may want to check them out on your own.

I'll definitely send you their link tomorrow. You have every reason to be hopeful and positive about receiving this financial aid.

Stefanie Putkowski, RN
rn@rarediseases.org

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