26 Mar 2014

18 year old's first marathon shines spotlight on sister's rare disease, Wolfram Syndrome

Iain Lynch 

The Brighton marathon is becoming one of the most popular long distance running events in the country. The fast and flat route gives the event’s 15,000 runners some of the finest panoramic views of the Sussex coastline, all set against the grassy backdrop of the South Downs.

For runner and fundraiser Iain Lynch, this year’s event on the 6th of April, will be his inaugural marathon. He’ll be running to raise awareness of a little-known disease - Wolfram Syndrome, following his younger sister, Jennifer’s diagnosis with the condition in 2010.

Debilitating disease

Wolfram Syndrome is a genetic disorder that affects many parts of the body. The rare condition is also known as DIDMOAD, after the disorders it presents (Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness). A progressive, degenerative disease, the outcomes are debilitating.

It is estimated that often a patient will be registered blind within eight years of diagnosis. About three quarters of patients get Diabetes Insipidus and two thirds become deaf in their teenage years.

Jennifer’s daily life is affected by the condition. She has Diabetes Mellitus, which is insulin-dependent diabetes. As a consequence, she has to check her blood sugars at least four times a day, and receives four injections a day of insulin. Registered blind, Jennifer also suffers from Optic Atrophy, which causes loss of vision and, in some cases, complete blindness.

Iain explains the daily impact this has on Jennifer’s life: “She requires help with moving about in new or busy environments. Jennifer becomes very anxious in new or unfamiliar places so a discussion has to take place about a week before going anywhere to help with this. Two years ago following a severe choking attack she had to have a tracheostomy. This means that she always has to have someone with her to suction the tube if required or unblock the tube in an emergency.”

Building the UK’s only Wolfram Syndrome family support group

Wolfram Syndrome UK (WSUK) was founded by Iain’s parents in 2010, following Jennifer’s diagnosis. With scant support or information on the condition, they set up the support group website to provide a space for affected families to talk and benefit from support and useful resources.

A registered charity, the main aims of WSUK are to provide support for the families and people affected, either financially through grants for equipment, respite help, travel, or emotionally. With the support of WellChild, WSUK organises an annual conference where news on the latest research and fundraising can be heard, they get a chance to meet up with old and new friends, visit stands with useful advice on equipment, holidays, support and attend workshops held by the clinicians from Birmingham where the multi-disciplinary clinics are held.

WSUK also wants to raise awareness about the condition, not just with the public but also in the medical world. Some sufferers are going undiagnosed for years with doctors thinking that they just have vision problems related to diabetes, or that they are separate conditions.

Funds are needed to support the day-to-day running of the charity – and ensure its survival. Monies generated through sponsorship events and fundraisers also go towards supporting affected families, whether this is transport costs to a conference or the annual clinic, or funds for a respite break.

Iain said: “I have always wanted to do a marathon as, for me, something like this is one of the ultimate challenges for the human body. I have always been keen on challenging myself and pushing my body to the edge, and now I have a chance too, as well as doing it for a worthwhile cause.”

MyDonate came out top

Iain explains their decision to fundraise through MyDonate: “After having done lots of research into the various sites, the charity chose MyDonate as they came top in a list created by Martin Lewis’ site Money Saving Expert as well as seeming to be the best for value for the charity. There are no set up fees or admin fees and things like credit and debit card transaction fees were lower which meant that the charity would receive more of the money donated than other sites give. They seemed to be much better for a charity than more well- known sites.”

Support Iain’s first marathon by donating to his fundraising page.

Find out more about Wolfram Syndrome UK on their website.

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