Story
On the 11th of August, the three of us will be taking on the 22.1 mile Dundee Kiltwalk route, in the hope of raising money for a charity close to our hearts... PNH Scotland.
Our sister / daughter in law was diagnosed with Paroxysmal Nocturnal Hermoglobinuria in February 2023. PNH is an ultra-rare blood disorder which is caused by the bone marrow producing blood cells incorrectly, due to this the bodies own immune system thinks the cells are a threat and attacks them. This can cause many different symptoms such as extreme fatigue, yellowing of the skin and eyes, breathlessness and chest pain. The abnormal cells (PNH cells) that are produced are also more likely to clot than normal cells giving patients a higher risk of a fatal blood clot.
Haemolytic PNH is the type our loved one suffers from, affecting only 5 people per million. As you can imagine this diagnosis was a shock to everyone as she was a super healthy 21-year old girl.
Since diagnosis, Carmen has been receiving intravenous infusions of a life saving drug which allows her to have a normal life expectancy, alongside taking several tablets daily. This treatment plan allows Carmen to live a mostly normal life without weekly blood transfusions.
PNH Scotland is a small charity, registered in November 2011. The charity's objectives are to raise awareness of PNH and to ensure all patients have access to the relevant treatment they need. The aim is to provide a point of contact for patients and their families to make sure those affected by PNH do not feel isolated or unsure of the condition. Any money donated to this charity will go directly towards their goal of giving patients their life back.
Any donations or shares would be so greatly appreciated!