On February 25th I will be climbing Bennachie to raise money for PNH Support, a charity that helps people with Paroxysmal Nocturnal Haemoglobinuria feel less alone living with the ultra-rare bone marrow failure disorder. Feel free to join me on my walk - it will be a challenge for me but hopefully a nice scenic walk for you!

I was diagnosed with PNH at 17 years old and felt very isolated in my experiences. The disorder causes our immune system to destroy our own red blood cells resulting in symptoms including (but definitely not limited to) anaemia, overwhelming fatigue, blood clots, and abdominal pain. The treatment I am on has been life-saving but unfortunately has caused me to contract meningococcal sepsis twice (if you are interested in reading more about my personal journey, follow my PNH instagram @pnh_and_me).

Jovi’s PNH Journey (@pnh_and_me) • Instagram photos and videos

PNH Support has given me a community of people who understand what it means to live with PNH. The charity advocates for people like me, connects patients to make sure no one feels alone, and collects and spreads much needed information. 

By donating, these funds could pay for PNH Support to hold a patient and family conference, host more face-to face meetings which are much needed especially after most of our community were shielding throughout the pandemic. Your donation could also ensure they have the capacity to answer patients’ questions as well as ensure we have all the most up-to-date information we might need. It could also help them gather data needed to evidence that new treatments being developed to address the symptoms of PNH are worthwhile and improve patients’ (and in turn their families) lives. For more info on the charity and the Better Together campaign we are part of, check out 

PNH Support – Super Rare – But not alone (super-rare.org)

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Thank you for reading and please, please consider donating! No amount is too small!