As a mum of a 3 year old, that has Severe Haemophilia A, I feel that being a parent mentor provides enormous benefits for newer diagnosed families and myself as a mentor. Sharing stories and being open and able to talk to someone, that is having difficulty understanding a situation, or coming to terms with diagnosis, may help families to grow in confidence, to manage the condition, and to normalise daily family life, that of course still carries on despite hospital visits.
I would like to help families and the community of people living with bleeding disorders. Share experiences. Gain confidence and promote the confidence gained by my volunteering experiences.
My husband and I have participated in Haemophilia Live – a project set up by Bedrock to video diary our experiences daily, and answer questions that were asked. We got great feedback from Bedrock and from ERI clinic about great footage they could use from our filmed diary to use to train Dr’s, Nurses and Physiotherapists. A lovely feeling that we had helped in some way.
Hi Joanne my son was diagnosed on friday with severe haemophilia type a, No one in my family has this condition, i am just looking ffor a support group so i can speak with people in the same similar situation as me because at thus time i feel very much alone.