Your health is your wealth
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Written by Graham Kirk, International Niemann-Pick Disease Registry (INPDR) Ambassador
Graham Kirk shares his personal story of being diagnosed with Niemann-Pick disease type C, his journey to acceptance and how finding his community has provided him with direction and purpose
“Your health is your wealth”, as my grandad used to say…
In 2010 my world changed. I was diagnosed with Niemann-Pick disease type C, on the back of my sister’s diagnosis.
I made the decision I was going to live my life to the fullest, not jumping out of airplanes but making my footprint in the world. Post diagnosis I went on living my life, almost ‘ostrich’ like. My head in the sand not realising what was ahead of me. When I accepted the position I was in, it gave me belonging and clarity. Which is strange I know. I was lucky in a way that I saw my sister, Paula, suffer with it and it has given me markers to hit on my journey.
Paula was 30 when she passed, I am 40—life begins now!!! No??? Well I hope so…as I look around at what I have and I am thankful. I have the most wonderful family; a wife, three kids, Mam and Dad. (Sadly my Mam passed away in 2024, but she has a special place in our family).
My journey to diagnosis was hard as Paula got diagnosed in early February 2010 and the doctor asked if she had any siblings that would want to be checked. I, at the time, was living my best life. Not a care in the world… That all changed quickly when I found out, which led to me going across to the UK, to London to the Niemann-Pick UK (NPUK) Annual Family Conference & Interactive Workshop on Niemann-Pick Diseases. This opened my eyes to other patients and the complexities of the disease in question.
Later, around 2015/2016, I came full circle, accepting the hard road ahead of me. I decided to leave work in 2017—not because I was giving up, but to move back to Rush (my hometown) with the family. At that time, I realised what I was up against and really started to engage in my health and self-managing the illness. I started going to the gym, started eating better, taking my medication regularly—all these things contributing to my ongoing health and the good health that I’m in at the moment. I am without aids or wheelchairs.
I joined the broader Niemann-Pick community through the charity—such a fabulous organisation, NPUK. In 2019, through Covid-19, that was the one group that got me through it when I couldn’t see friends or family—just touching base, having a voice to listen to and people to listen to you. Coming out of the pandemic and again doing the best I could for the disease group, I was asked to join the International Niemann-Pick Disease Registry (INPDR), set up by NPUK and International Niemann-Pick Disease Alliance (INPDA) co-founder Jim Green. But as Jim says, it is “for the community, by the community”, which is a really strong message for such a small group.
The Registry takes patient information from patients and from clinicians “hospitals’ or sites. So you are getting a holistic view of all the patients who have signed up and whose hospital has signed up.
When I first heard of it they had just under 200 participants in 2023 on the registry. Now they have 500+ people globally today so you are starting to get a better view on patients by demographics etc.. A truly unique offering from such a small disease network.
They have provided some interesting insights in discovery and medical improvements has resulted in more offerings to help the effected disease groups. I’m very proud to be involved with its continued effort to meet the challenge of the disease intervention head on, and to help sculpt and shape things as they go. I have met some amazing people, patients, patients’ families,carers, doctors, pharma…the best of the best!
But it is a marathon, not a sprint — I’m just glad my footprint is part of it.
Rare Patient Voice, A Konovo Company, are the proud sponsors of the Patient Voice section of RARE Revolution for February, March and April 2026. They provide patients and family caregivers an opportunity to participate in all types of research including market research, health economics outcomes and real-world evidence, user experience/human factors studies and clinical trials. The RPV community includes over 185,000 patients and family caregivers across more than 1,500 diseases, both rare and non-rare, in nine countries. Learn more here.
