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Hello,
Am from Cyprus and i would like to know more about this syndrome (oral facial digital) and to find other parents that have children with this.
Also i would like to know what exams you have had (you, husband and child)
Thanks Tonia
Tonia,
I will help you find information about this condition. There are many different types of oral facial digital syndrome. Has a specific type been diagnosed?
Hello,
The doctor at the Genetic Clinic (she is the only one they have) isnt sure yet what type my daughter has.
She has extra digits on both hands, duplicated hallux (great toes), cysts on her tongue and cleft lip. We found out about our child’s anomalies only after she was born. I want to know if during my pregnancy the doctors could have seen the extra digits.
Also we want to know what exams should we have (me, husband and baby)
When is the best time to have the operations?
I feel am at a dead end. Everything is moving in slow motion.
I
I am so very sorry for all you are going through.
Please contact orphan@rarediseases.org and request the NORD report on oral-facial-digital syndrome which has a list of resources that may be helpful.
The following resource may be helpful for your doctor:
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=ofd1
Best wishes to your daughter and let me know if I can be of additional assistance.
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