Back in 2016, at the age of 22, my sister was diagnosed with a rare lung condition, Chronic Pulmonary Arterial Hypertension. Soph suddenly became very breathless and after numerous trips to the doctor complaining of shortness of breath, she was finally diagnosed. Prior to this, Soph had always been an active, healthy child and had never suffered with any medical conditions. 

PAH is a type of high blood pressure that affects the arteries in the lungs and the right side of the heart. It is a degenerative disease that significantly impacts patients' day to day lives, making daily activities for Soph and other patients, such as walking, or climbing stairs, much more difficult due to the severe breathlessness. There is currently no cure for PAH, however there are effective ways to manage the condition and help to improve signs and symptoms and slow the progression of the disease. The median survival from time of diagnosis used to be 2.5 years, however, with current treatments, most patients are living 7-10 years and some are living as long as 20 years.

Over the last 6 years Soph has been utterly incredible in the way she has handled her diagnosis. She has tried various oral medications, to which she didn’t respond, and was then fitted with an IV Hickman line that pumps her medication 24/7, and thanks to this treatment she has been able to lead a more normal life. However, these treatments are only temporary, and with no cure to date, the only long-term solution is a double lung transplant, which comes with its own complications.

Our family want to do our bit to raise awareness of Pulmonary Arterial Hypertension, so that we can help to find a cure for Soph and other patients suffering from the disease. PHA UK is the only charity in the UK dedicated to supporting people affected by the disease, and from its launch in 2000, PHA UK has now grown to almost 4,500 members. Their community is committed to supporting each other and raising awareness of this serious condition, in the hope of one day finding a cure. In order to raise funds to assist in the research for a cure, and ways to improve the way PAH is treated and managed, we will be kicking off our fundraising with some family and friends running the Great North Run this September in Newcastle.

Any donations to PHA UK would be much appreciated.