Thanks for taking the time to visit my JustGiving page.
As you all know, Charlie was diagnosed with a rare blood condition in 2005 called Essential Thrombocythemia which is a myeloproliferative disorder. We had no idea what it was either! Now having had 4 years to get used to it, in laymans terms, not only does his bone marrow produces too many platelets but also they are abnormal. Platelets are responsible for the stickiness of your blood. The normal range of platelets in your blood is 150,000 - 400,000, at diagnosis Charlies count was 2.6 million. His blood was as thick as molasses.
There is no cure. His treatment, to try and keep his platelets within normal range, is 3 chemotherapy tablets a day and regular blood tests. The toxins from the tablets have to be counteracted with other tablets. He has continuous stomach problems and suffers frequent bouts of fatigue. He has a severely weakened immune system and regularly picks up infections and viruses. The toe injury, that led to the diagnosis, still, and always will, cause him pain, at times extreme.
But ... you all say, he always looks so healthy!! He works hard to stay healthy and has a healthy attitude to his illness.
Each day brings us closer to finding a cure which is where this page comes in.
On the 21st November we are taking part in a sponsored circle line event. 20 of us will be given clues to 10 stations on the circle line and, wearing all manner of strange get ups, visit those 10 stations and have our photograph taken there to evidence that we have been there. We will also be at Gloucester Road station with collection boxes.
Guy's and St Thomas' Dr Claire Harrison, a haematology consultant, runs a support network for people who suffer from MPDs (myeloproliferative disorders). MPD Support’s mission is to provide health information, emotional and social support to people with these rare diseases.
Dr Harrison and a team of patient volunteers run a website that provides information on treatments, research news and psychological issues. They also publish a regular newsletter and offer a peer support programme and a forum for MPD patients. The GSTT Charity manages donations and gifts made to MPD Support.
Groundbreaking research in 2005 uncovered the genetic mutation responsible for many MPDs. It’s an exciting time for people with myeloproliferative disorders, as researchers rush to find targeted treatments that will help sufferers live longer, healthier lives. Clinicians and patients are working together at MPD Support to raise monies for ongoing patient support programmes as well as research towards a cure.
Please help us to not only raise money for this valuable organisation but to raise awareness of this disorder.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now.
