"The Health & Care Services I have experienced"

As a patient with a Rare disease, the Health & Care Services I have experienced in relation to my disease has been disappointing.  I compare to patients who attend Royal Free London Scleroderma Centre and the treatments available to them are so much better in terms of Fat transfer of stem cells to face - Botox injections to hands - a proven therapy that has worked for Raynauds.

The treatment I have received here in South Tyrone Hospital for Iloprost, and the staff, have been outstanding, and I love the fact we travel everyday - The staff are amazing at what they do and I have felt very comfortable.  A rare disease Centre for people who suffer Raynauds - (ulcers that need Specialised treatment) and a specific place for us to go when we need to get them dressed would be amazing - this Centre could also be a location for clinical trials - whereby shared care with specialist Centres all over the UK could be availed of.

I am involved with a support group for scleroderma patients across the island of Ireland so we can get the care and support we need specific to our condition - it would be great if health care specialists, in the condition, could get on board and create a hub where we can share treatment experiences.  I know AP Therapy works as I have spoken to patients from USA that it worked for - also stem cell treatment not available to us - there's so much we do not get offered and it would appear this could be a saving to NHS if some of the treatments were offered over  the expensive immunosuppressant treatments.  I would be willing for someone to contact me - I would help out in any way I can.