|
| 1) |
The twins, Halla Ruth and Silja Björg were born in Iceland the 9th of November 1987. |
| 2) |
23rd of November 1987, Halla Ruth had a grand mal seizure. When the ambulance arrived we thought that she had died. On the way to the hospital she started to breath again. She stayed in the hospital one week. All kinds of blood tests were taken, her heart and brain were examined, but the doctors couldn`t find anything wrong with her. |
| 3) |
After she came home from the hospital we took shifts, night and day, to watch her and when she stopped breathing we could help her. |
| 4) |
The symptoms were cramping in her throat, difficulty swallowing, periods of not breathing and seizures. The doctors did not understand what was going on. |
| 5) |
The 15th of July 1988 we moved to Sweden, hoping that the doctors there would find out what was wrong with Halla Ruth. |
| 6) |
In Sweden we went to the best doctors and she was hospitalized often, but they did not find the course of her illness. |
| 7) |
The 31st of Mars 1989, I read about HYPOPARATHYROIDISM and recognized the symptoms. |
| 8) |
April 2nd 1989, Halla Ruth became very ill, was constantly in spasms. She was dying at the hospital, when I finally found a doctor who would listen to me and order a serum-calcium test. The results came, Halla Ruth had a very severe HYPOPARATHYROIDISM. She stayed at the hospital for two weeks and was started on 1-Alpha (D-vitamin) treatment and calcium. |
| 9) |
August 1991, Halla Ruth was diagnosed with nephrocalcinosis, her kidneys were damaged because of the D-vitamin treatment. It was clear that she needed the PTH hormone. The PTH hormone was not awailable anywhere in the world, the patients that needed it were so few that it would not be a profit for the drugcompanies to produce it. |
| 10) |
I read hundreds of articles in MEDLINE about hypoparathyroidism, but could not find anything written about treatment on people with the PTH hormone. |
| 11) |
August 1993, I wrote letters to 35 of the authors of the Medline articles and other scientists, asking if they new about anyone in the world treating patients with the PTH hormone. |
| 12) |
September 1993, I had recieved 18 answers from my letters. Few of them told me about Dr. Karen Winer and her study of the PTH hormone(hPTH) treatment at the National Institute of Health, USA (NIH). |
| 13) |
On October 1, 1993, Dr. Karen Winer told me that Halla Ruth was welcome to take part in her study. |
| 14) |
On January 5th 1994, Halla Ruth started on the hPTH(synthetic human parathyroid hormone). She was the first child in the world to be treated with hPTH. |
| 15) |
In August 1994, Halla Ruth was randomized to the long term study of the hPTH. She has been on the hPTH treatment since. |
| 16) |
In August 1997, the tests on her kidneys showed that the kidney damage was gone. Halla Ruth`s kidneys were normal. She has got a new life, thanks to Dr. Karen Winer and the hPTH. |
| 17) |
On October 1, 1998, Dr. Karen Winer told me that the study would be cut down to 3 years for every patient. Halla Ruth will have the hPTH for 6-12 more months. After that she will need to go back to the D-vitamin treatment. |
| 18) |
October 3rd 1998, our hope is that Swedish ORPHAN will be able to help us to get the hPTH for Halla Ruth. We must get the hPTH for her somewhere, so she will be able to keep the good quality of life that she has today. Halla Ruth says herself: I am not ill any longer, I just need to take my hPTH injections. |
| 19) |
October 1999. Thanks to Swedish ORPHAN Halla Ruth gets the hPTH. |
