Kellie’s story
Life was pretty good for my daughter Kellie in 2005. She was happy at boarding school with plenty of friends, doing very well academically (on an academic scholarship) and enjoying her new love of rowing. Then, out of the blue, she started collapsing for no apparent reason. This was the beginning of a roller coaster ride into the unknown.
After months of ambulance journeys and the like, Kellie was admitted to hospital for tests (MRI, EEG, ECG etc.) but nothing was found – she even collapsed in the hospital corridor as she was discharged! A moment I will never forget. We visited every conceivable specialist you can imagine (cranial osteopaths, voice/speech/breathing specialists, paediatricians, hormone specialist, cardiologist, Chinese herbalists, homeopaths etc. etc.) Poor Kellie thought she was going mad and many of the so-called experts suggested it was all in her mind and that we should pursue the psychiatric route. Fortunately, sense prevailed when we rationalised that it was not possible for her to physically make herself collapse 10/20 times daily.
Then my husband found the STARS website. That was the beginning of sanity. Jenni Cozon was and is our saviour. All the wonderful STARS literature poured through the letterbox and the wristbands found new homes with all of Kellie’s friends. We, at last, had an identity and there was light at the end of the tunnel. Jenni gave us lots of medical names to contact and, of course, the details of the STARS conference. My husband, Kellie and I attended one day of the conference. It was wonderful. We had already had an appointment with one of the specialists talking so we felt very much at home! Then a Professor of Neurovascular Medicine and an expert in the autonomic system gave a talk about POTS. I will never forget to the day I die the excitement we all felt individually – he was talking about Kellie – everything he said was exactly how she felt.
The whole day was invigorating. In the afternoon we had a wonderful opportunity to talk to other sufferers of POTS and share experiences. Kellie, for the first time in a year, realised that she was not going mad. Thank you Trudie for helping Kellie off the floor (both literally and metaphorically!).
After the conference we made an appointment with an autonomic specialist in London and after a number of tests Kellie started on midodrine. Kellie missed two terms of school and she used to collapse up to 10/20 times every day. In January she sat her mock GCSE’s (in her pjs!) and is gradually (albeit chronic fatigue) getting her life back.
We will definitely return to the conference this year because you can never stop learning and you can never have enough friends who understand and accept you as you are.