Cara's Story

"My name is Cara Jenkins, I am 32 and live with my partner in Butetown, Cardiff. I have a lifelong genetic condition called common variable immune deficiency which I was diagnosed with 4 years ago. The condition means that my body does not know how to produce antibodies. I have to have a weekly subcutaneous injection (under the skin) of immunoglobulin that takes time and is painful.

The immunology department that looks after me have an annual conference that I go to and it was there that I heard about a trial for people like me. So when I was asked about taking part in the trial it was not a surprise and I was happy to agree. The trial was called a licensing trial; the drug company was looking to see if the drug I have could be licensed to be given in a higher concentrate which would take less time as the volume isn''t so big. Having the drug in that way on the trial not only took less time but was less painful. I had a year of having the drug in the higher concentrate and that finished a year ago. It was hoped that the drug company would let me stay on the higher concentrate but unfortunately I have had to go back to having the drug in the lower concentrate.

For me there were no disadvantages, I wanted to take part as I thought it would mean my treatment would be easier. In my case the trial helped me but it may also help future patients. It is always worth speaking to your doctor if you want information about taking part in a trial."

Cara was recruited at the University Hospital of Wales where she was attending the Primary Immunodeficiency clinic. She was one of only two patients recruited in Wales, in rare disease the target numbers for studies are often very small and in this case the target for Wales was only two. Cara received her treatment both in hospital administered by a specialist nurse and self-administered at home.

April 2015