Raising awareness of Rett syndrome

October is Rett Syndrome Awareness Month – and a number of people all over the world are taking part in fundraising activities and charity appeals in their efforts to raise awareness of the condition.

Rett syndrome, which is sometimes referred to as RTS or ‘cerebroatrophic hyperammonemia’, is an ultra-rare condition that affects a very small minority of young females from birth.

Typically, around one in every 10,000 to 15,000 newborn girls will be affected by the genetic mutation that causes the disease – which is only found in the X-chromosome, making it far less likely that young boys will contract the condition.

Rett syndrome causes a number of complications for youngsters living with it, but the condition is not always spotted right away, as its symptoms and effects often do not occur until the child starts to develop.

After around six months of age, those affected might experience problems with balance and co-ordination, issues with breathing or speaking and involuntary, repetitive hand movements. Sufferers are also known to encounter learning disabilities and intellectual issues.

This month, fundraisers in different parts of the world are trying to raise greater awareness of the condition through a series of events.

Jay Murry, a broadcaster at Washington University in the USA, will be taking on a 24-hour run in an effort to raise money for Rett syndrome research, which could one day help the 200,000 people all over the globe who are affected by the condition.

“I have a soft spot for underdogs, so I began to see how I could use my hobby of running 12-hour ultra-marathons to aid a great cause,” he told a recent interview.

“Last November, I had been thinking about doing a 24-hour run because I hadn’t done one before,” he added, explaining how his plans had come to fruition.

Elsewhere, in St. Louis, Missouri, a ‘Stroll-a-thon’ will take place, where people from all across the state will gather together to walk for Rett syndrome.

It is hoped that these events, along with similar ones taking place here in the UK, will go a long way towards improving awareness and understanding of the condition.

Enviva Paediatric Care provides nurse-managed homecare for babies, children and young people. To find out more about our services, contact us today. 

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