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Forum Newbie
Group: Forum Members
Last Login: 6/23/2008 6:00:13 AM
Posts: 6, Visits: 9 |
| At the moment, Taylor is doing great. She attends school and honestly has minimal side affects compared to many others. # years ago she was in and out of the hospital with severe headaches and it was discovered that she had 2 bony lesions in her scull. Her case is atypical because that is the only symptom of Gorham's she has. the destruction has caused vision and hearing loss in her left side as well as facial palsy. The Doctors call it Bell's Palsy, but I no longer agree with that because she has had it for 3 years.
I would love to exchange stories with anyone. Talking about it only helps in my opinion.
Proud Mom of a strong little girl living with Gorham's Disease |
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| | | Forum Newbie
Group: Forum Members
Last Login: 12/27/2008 7:13:22 PM
Posts: 9, Visits: 42 |
| You have a very beautiful young lady. Talking does help. Robin knew she wouldn't be with us when a cure was found. The alliance is a giant step forward.
blessedmom
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| | | Forum Newbie
Group: Forum Members
Last Login: 12/28/2008 12:44:52 AM
Posts: 3, Visits: 7 |
| | We also just found out our daughter has Gorham's syndrome. She is 7 years old and we had never heard of this and her doctors also had no experience with this. It makes it pretty tough when you just do not know what to expect and your doctors really have no research to compare to. She also has no symptoms as far as Gorham's, her symptoms have been headaches since she was born. I was grateful to find a site that you can speak with others directly affected by this. |
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| | | Forum Member
Group: Administrators
Last Login: Today @ 2:57:14 PM
Posts: 26, Visits: 621 |
| | Hello and welcome to our forum. We are all here to support each other and share experiences. These conditions are extremely rare and we hope that you find comfort in now knowing that you're not alone. If you have any questions, are in need of finding a doctor/specialist for your daughter, or would like to talk with another parent, please feel free to contact us anytime. We will do our best to assist you in any way we can. I would like to encourage you to Join our Mailing List which will soon provide quarterly updates on things that are going on. You can access the registration for this on the homepage. Jana, Director of Patient Support support@lgdalliance.org |
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