On 9/3/24 I will be climbing Clachnaben 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.

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

How PNH Support are planning to help people this year:

-Provide expert emotional well-being support, designed and delivered by qualified psychologists

-Help members of our community to access benefits and insurance

-Publish new up-to-date information resources to help people understand the condition, current research and treatment

-Facilitate improved opportunities for peer-to-peer support

-Raise awareness and help you to explain the condition to clinicians, teachers, employers, and the public.

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

Jovi xox