Burosumab is a new medication for XLH ( X-LINKED HYPOPHOSPHATEMATIC RICKETS) it is going through NICE at the moment to see if the NHS will fund the new treatment. This disease is rare and not many people would of heard of it. I have this disease and so does my son. We have met 6 other families who children have XLH and some of their parents have it as well. We only met these other families through having the new treatment. The old treatment wasn't working for my son and this new treatment is. But NICE are saying it's to expensive to have on the NHS, how can they put a price on a child or it's family.
XLH effects us in many different ways, we have weak bones, malformations of bones, in pain very day, get bad teeth and many more symptoms. This treatment will change our children's lives for the better, means they will be able to grow properly and join in with other children who is of the same age.
Us sufferers of XLH do not choose to be in pain everyday to have to go to hospital every 3 to 6 months. Have to have surgery to correct our alignment to try and help us be in less pain. We don't choose to be bullied by others and they don't know about our condition.
This treatment will allow our children not to suffer like we did. Please help and get burosumab on the NHS.
Jenson, Mason, Lilly and Poppy are a few of the children I know cross the country who are all receiving this treatment. Please help all 4 of them and many more who need this.
#thebristolgroup #jenson #poppy #lilly #mason
