New Patient's Corner

So here I am – a “new kid on the block” – recently diagnosed anyway – and looking forward to creating a positive
side to this condition. I want to use all I can from my background – as a mother and grandmother, as a Human Resources professional for over 25 years, as a Pulmonary Hypertension patient, as a daughter whose mother also had Raynaud's and scleroderma over 30 years ago and now as a Raynaud's / scleroderma patient myself with the added concern that my own daughter has also developed Raynaud's.

All these experiences, I hope, can be converted into knowledge and actions that will enable me to understand and cope with my own condition and changes that will take place over the coming years. Keeping ahead of developments for my daughter as well as helping others. I would like to find out more about this condition. Perhaps by meeting up with other patients local to myself. I live near Stamford and could drive to anyone else within reasonable distance, who would welcome a visitor / fellow patient. Or perhaps we could get together a small local group. Or if you prefer just a conversation,then my phone number is available below, and of course there is always email !

I would also like to form links between the groups with which I am currently involved. I have recently taken over the leadership of the Papworth Support Group and hope to increase participation by the members. I have also joined the Patient Experience Panel based at Papworth Hospital and am involved with the Pulmonary Hypertension Association. At the excellent Annual Conference last October I met up with a small group of fellow PH / scleroderma patients and we exchanged some information but this was limited by the short time available. Perhaps this year's Conference (October 6 th to 8 th ) to be held in Nottingham will allow more structured time for discussions within sub-groups like ours. If I get some interest from you about this I could lobby the Conference organisers on our behalf!

The PHA ‘Inaugural Meeting' to lobby for direct funding for treatments was held at the Houses of Parliament last December. It was attended by MPs, PH patients and carers plus clinicians - over 150 in total. I was asked to speak about my experiences of diagnosis and treatment as an example of the experiences of most other PH patients. It took four years with initial diagnosis of hay-fever then marginal asthma to explain my breathlessness and fatigue until a deep vein thrombosis and pulmonary emboli prompted the battery of tests to confirm my real condition of Pulmonary Hypertension.

As I moved house at the end of last year I had to “take a rain check” on the voluntary work I had undertaken on the Greeter desk. This year Papworth have decided not to run the Annual Fund-raising Fete. So I will not need to make the many, many phone calls I made last year asking for free plants which helped us to raise a record amount for plant sales on the fete day. I am sure though that other opportunities will arise and if this article does prompt any interest, ideas or questions, please contact me – I would love to hear from you. Kay Atkin

01780 444345 kay.atkin@btinternet.com .