-
Support us
Category Archives: Patients’ tales
Beth@NIH 7: Occupational therapy and hearing
So Josiah took off all the glue from my head with something that reminded me of nail polish remover. My hair was soaked and horrible and all the stickers on my face had to come off too. While this was … Continue reading
Posted in National Institute for Health WAGR study, Patients' tales
Tagged Beth Dawes, NIH
Leave a comment
Beth@NIH 6: P is for pictures
P is for pictures There is nothing like spending an hour in the MRI scanner trying to keep still and not being able to move to make you all achey. Apparently I had the wiggles on one set of pictures … Continue reading
Posted in National Institute for Health WAGR study, Patients' tales
Tagged Beth Dawes, NIH
Leave a comment
Beth@NIH 5: Weekend
On Saturday I got up and managed to chat to my parents and Graham on msn. I went over to the hospital cafeteria which was the only food place open. The pancakes were tasty but the bacon was too greasy.
Posted in National Institute for Health WAGR study, Patients' tales
Tagged Beth Dawes, NIH
Leave a comment
Beth@NIH 4: Food
I got up early on Friday and headed over to the ward. I ordered my breakfast and the nurse asked for a phlebotomist to come and take my bloods this was at 8.15am. My breakfast arrived at 9am but I … Continue reading
Posted in National Institute for Health WAGR study, Patients' tales
Tagged Beth Dawes, NIH
2 Comments
Beth@NIH 3: Numbers, Words and Numbers I
I got up and came over to my room and ordered breakfast so that I could eat and get to my 9am appointment. Unfortunately it didn’t turn up until 9am so Shannon helped me carry the pancakes and my two … Continue reading
Posted in National Institute for Health WAGR study, Patients' tales
Tagged Beth Dawes, NIH
Leave a comment
Beth@NIH 2: Admission day
I woke up feeling a lot brighter and set off to the hospital to be admitted at 7.15am. It is only a 2 minute walk to the hospital from the lodge and I get the feeling you are supposed to … Continue reading
Posted in National Institute for Health WAGR study, Patients' tales
Tagged Beth Dawes, NIH
Leave a comment
Beth@NIH 1: 4,000 miles and 3 countries in 24 hours
I set off on my travels to the NIH. Armed with my pink bags and my white cane I set off in a taxi to the airport. Once I got there I though I wouldn’t need any assistance from the … Continue reading
Posted in National Institute for Health WAGR study, Patients' tales
Tagged Beth Dawes, NIH, travel
Leave a comment
My left hand girl has gone on her jollies while I go to NIH
I always have enjoyed reading the medical literature about the other effects my genetic deletion (PAX6) has on the body apart from the eyes. I was also interested to see the similarities and differences between just having aniridia and having … Continue reading
Edinburgh Aniridia Conference
On Wednesday evening Sandie (guide dog) and I met Katie, Jenny and Jaynie (guide dog) on the train up to Edinburgh. As always we talked non stop catching up on the news despite chatting on MSN very regularly. Sandie and … Continue reading
Beth’s introduction
I was diagnosed with aniridia at 3 months old as I wouldn’t open themnfor the Dr when he did my checks just after I was born. In those days genetic testing wasn’t as advance and I was screened for Wilms … Continue reading
Aniridia Network 