Volunteering: In your words

Reprinted from MND Association Web Site
Campaigns Contact ? Katy Styles of MNDA East Kent

Our Campaigns Contact volunteer, Katy Styles, tells us her story about why she volunteers for the Association?

?The MND Association support people living with MND, but did you know it also supports those with Kennedy?s Disease, their carers and families.?But how much do you know about this rare disease?

Kennedy?s Disease is also known as Spinal Bulbar Muscular Atrophy. It is a rare disease and no one currently knows how many people live with it in the UK, so you may not have come across it as a volunteer or member of the Association. Kennedy?s Disease is a progressive neurodegenerative disorder which means that people with?it live with muscle wasting, mobility and breathing problems, swallowing and speech problems and a range of hormone problems.

My husband Mark was diagnosed with Kennedy?s Disease six years ago, until then?we had no idea that it ran in his family. He has gone from being physically active to depending on crutches and a wheelchair to get around. He uses a breathing machine at night to support his weakened chest muscles. He also?has a modified diet as he has problems choking. In addition, he is monitored regularly for diabetes, a complication of Kennedy?s Disease. Kennedy?s Disease has many aspects people living with MND would recognise.

When we first joined the Association, little was spoken about Kennedy?s Disease. I met volunteers and staff who have never heard of the disease and if they had they were not aware of the problems someone with Kennedy?s would face. ?Mark and I knew then that we needed to volunteer with the Association to change this and through volunteering we could ensure that Kennedy?s Disease would be talked about and better understood.

I never realised when I first volunteered for the Association what difference raising awareness of the disease would make. Now there is a dedicated clinic supporting people with Kennedy?s Disease with a research programme. We?ve mentioned Kennedy?s Disease in Parliament and in March the Association, the clinic and UK Kennedy?s Disease (a charity set up to fund research into Kennedy?s Disease) are holding the first ever Kennedy?s Disease patient?s day. Things have come a long way in the four years we have been involved with the Association.

What can you do as a volunteer to support someone with Kennedy?s Disease?

  • Support anyone with Kennedy?s as you do with MND
  • Signpost them to the new clinic at Queens Square and encourage them to sign up to the Patients Register
  • Show them the MND pamphlets and literature provided by the Association, as these also apply to people with Kennedy?s.?

For more information about Kennedy?s Disease please download information sheet 2B from our publications list.

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