HCU, or Homocystinuria, is a genetic disorder that is incredibly hard for sufferers and their families to deal with. Essentially, HCU means that those who suffer from it can eat virtually no protein leading to a rigidly regulated diet. As you can imagine, this is no fun for kids who want to go to parties, raid the fridge and eat like everyone else.
When my niece was diagnosed with HCU, my sister and my brother-in-law had great difficulty in finding any information on the disease – support and advice from other parents was almost impossible to come across. Locating the right foods and food suppliers is a job in itself.
So we are setting up HCU CREDS as a charity that is to help to change that. CREDS is short for Cure, Research, Early Diagnosis, Support and the website along with Facebook have been key in building a community and allowing parents to get together so that they can talk to other families affected by HCU.
My charity work allows me to continue to raise the profile of HCU and help more people understand it as well as raising funds for increased research into the genetic disorder.