Spotlight falls on rare illnesses

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THE mother of a teenager with a devastating brain condition is supporting an international day to raise awareness of rare illnesses.

Katie Williamson has a crippling affliction that causes a build-up of spinal fluid, putting pressure on her brain and triggering debilitating sight problems and migraines.

Doctors warned her when she was 13 that she would have to undergo a series of operations in a bid to maintain her sight, and halt the symptoms of Idiopathic Intracranial Hypertension (IIH) that had plagued her for months.

Now, as the 18-year-old continues her battle with the illness, mum Michelle, from Biddick, Washington, is urging Wearsiders to give their backing to the sixth Rare Disease Day, which will see hundreds of patient organisations from more than 60 countries worldwide take part in a host of activities.

Tomorrow’s event which has the slogan “Rare Disorders without Borders”, is expected to be the biggest yet.

“There are at least 6,000 rare diseases and conditions which are known about in UK, but many of these are little-studied,” said Michelle.

“The main reason is that the people with the condition are not being registered so that critical information about their symptoms and lives can be gathered.”

The campaign mainly targets the general public, but it is also aimed at patients and their representatives, politicians, public authorities, policy-makers, industry representatives, researchers and health professionals.

Since Rare Disease Day was first launched by Eurodis and its Council of National Alliances, more than 1,000 events have taken place throughout the world, reaching hundreds of thousands of people and helping to advance major medical plans and policies.

“The day has been running for a number of years now and it is a good way to raise awareness of rare illnesses, not just IIH,” said Michelle.

“People can organise public activities or just visit the website for more information.”

Katie, a student at East Durham College, Houghall, has refused to allow IIH to hold her back.

In 2008, surgeons inserted a lumbar, a shunt which drained the cerebrospinal fluid, from the teenager’s lower spine into her abdomen.

But she was later rushed into hospital after her headaches returned and surgeons inserted an intra-cranial pressure monitoring bolt into her skull to check on the fluid pressure.

As well as being a keen horserider and swimmer, Katie is a junior representative of the IIH UK charity.

“Katie is doing fairly well at the moment,” said Michelle.

“We’re just waiting for an appointment at the Newcastle RVI to make a new shunt.”

For more information about Rare Disease Day, visit www.rarediseaseday.org

Twitter: @SunderlandEcho