When my wife Anita was diagnosed as suffering from Scleroderma approximately ten years ago we did not, at that time, realise the enormity of the "Life Style" changes, which we were to experience subsequently. Like most new "victims" our ignorance about the condition was such that we were completely unaware of the extent of the effect, which the diagnosis would have on our lives. Anita had been a super fit athlete and gymnast and our earlier lives included regular long runs and exercise, which kept us in good physical condition. I honestly believe that her physical regime has proved to be a factor, which has enabled her to cope with the limitations of her illness better than may have been otherwise possible.

Other sufferers will be aware of the muscular pain, weakness and fatigue which so often accompanies the condition as well as the Raynauds’ Syndrome which creates further pain and discomfort. Together we have attempted to adjust our lives to accommodate Anita’s new problems, which were further aggravated by Pulmonary Hypertension. This aspect of her illness caused distress and anxiety with which we have had difficulty coping. My own physical problems limit the amount of help which I have been able to provide in respect of the day to day household chores, shopping etc. This has resulted in further, and at times, severe anxiety and guilt. The physiological impact on Anita and myself has, perhaps, been the most difficult obstacle to overcome.

The help, support and advice provided by all staff at The Royal Free Hospital unit has been immensely helpful and the first class treatment has enabled us to enjoy a relatively normal life. It would be remiss of me not to record our gratitude to the medical and nursing staff for the exceptional care extended to those in their care and to the research teams behind the scenes whose efforts have provided help and hope for so many. Only through their efforts will progress continue to be made. It is also opportune to remind ourselves and other parties of the essential need for fund raising to support on going research projects.

Progress is being made. Recently Anita had a Hinkman Line inserted that has greatly improved her respiration and has enhanced her quality of life substantially.

Contact with fellow sufferers provides a moral boost and an outlet for sharing experiences and anxieties. It can be a source of reassurance and of learning how others cope on a day to day basis. In many ways we are like a family and Anita and I send our best wishes to all.

Stewart Stenhouse