maria, i have been using seaminerals as well. i have also been using a salt/oil from the deep sea. it has help remove and restore some of the dark brown spots ...
Hi Terri Sammy-Joes Legs are also pretty badly affected , I am not sure why? He really doesnt see much light , but as soon as he ventures outside all covered...
Hi would like to find out from all the members how the kids are all getting along with their sun sensitivity and light sensitivity ? I am pretty interested in...
maria, we use sea salts/oils that we apply directly to his skin before he gets in the bath. it acts as more of a wash to remove the scales. it has make a huge ...
Hi Maria I have been interested to note that light sensitivity is an issue for some of the TTD children. Liam (14) has many difficulties but sunshine does not ...
Hi, What a lucky girl your Kelsey is, to have such a fantastic Mum and siblings. Our Talitha is 8 now, she thinks she's 28. We used top visit a gastro ...
I am interested in finding out who your doctors are in ScotLand that were able to diagnose Kelsey at an early age ,it would be great if you could also give me...
Hi Lee What are Talithas usual reactions to light, is she very sensitive also . I have finalised the Friends Of Sammy-Joe Foundation and its awaiting DGR...
Maria, You can be very proud of what you have achieved. Talitha is very sun/light sensitive. We keep her out of direct or reflected sunlight as much as...
Hi Lee and Christine, My name is Ronda and my daughter Kimberlee has TTD. Kim goes to Pine Rivers Special School so we are just down the road from you. If you...
Hi Maria, In reply to your questions, Kelseys Consultant is a Dr John Tolmie, who was at the time based in the Duncan Guthrie Institute of Medical Genetics....
lee, what a great picture!!! i would love to have more information about possibly getting a trike for tyler. could you send me more about it and the website. ...
Hello Lee and christine, I know what you mean, Kelsey HAS been here before, I'm sure of it! We call her The Boss in our house. Sometimes when were having a...
Hi Ronda, Not far at all by the sounds. One day we will get together. We moved to Bray Park from Morningside (on the good old South side of Brissy town) at the...
Hello again Maria, Kelseys not overly sensitive, though sometimes if shes been out for too long she gets a headache, but then so do I. I use Soltans 60 Extra ...
Sydney got a bad sunburn when she was about 1 from being outside for 15 minutes. So we now only take her out when needed and only with sunscreen. She spends...
Luke's sun sensitivity is one of Luke's biggest obstacles. Now that the season's have changed and it is hot outside, Luke cannot go out much. Over the years...
tyler is very much an outdoor kid. but is also very sunsensitive. we keep the sunscreen with us at all time. (right now i have 2 different types in my truck...
Hi Kimberly Sammy-Joe is the same, its hard in summer , he enjoys winter more butwe still have to measure the UV index , we use Hamitons sunblock on him the...
Its so wonderful to have the whole community involved , raising awareness sure has its benefits , everyone keeps an eye on Sammy-Joe too , they tend to see him...
Hello everyone: I am just writing to say hi, and to let you know that I have been thinking about you all. It is hard to believe that Megan has been gone for...
Hi Everyone, Â I am sorry I have been missing for a while. Collin still has LOTS of problems with the sun. He can be in the sun for around 15-20 minutes a day...
Dear Katie, I cannot imagine the pain you must feel, may God be with you and your family. Try to think of the good times on Saturday. Karen ... From:...
The Memory of Megan and her beautiful soul will live on forever in our hearts and through all the good that the fund will provide ,please know we are thinking...
What are the signs and symptoms of mesothelioma. Know the facts now. www.freewebs.com/themesothelioma ... Food fight? Enjoy some healthy debate in the Yahoo!...
This other website has been hit with a lot of spam lately. These members may not know about the TTD Support group - not sure who the administrator is. Hamish ...
Hi, we have a son with TTD, he is 10. James is doing well at the moment. Ask any questions you like we have all been in your shoes. Sharon, Australia _____ ...
Hi Rachel: My name is Katie, and I was blessed to have a beautiful little girl who filled our lives with so much love and joy for over 7 years before the Lord...
We went through 4 years of testing on our eldest daughter before we finally got a diagnosis of TTD. She was born 9 weeks early, so for the first 6 months the...
Rachel, Like Theo, Sean has also seen what seems like every doctor in the book since he was born. We ended up seeing 4 different geneticists before getting...
