Ashley Delgado
TCS London Marathon 2024
Fundraising for Huntington's Disease Association
Story
Welcome to my TCS London Marathon #TeamHDA fundraising page. I will be taking part in the 2024 TCS London Marathon to help us support people living with Huntington's disease in England and Wales and also to raise as much awareness about the rare disease as I possibly can.
Huntington's Disease is a very rare neurodegenerative condition that leads to a decline in health over a period of 15-20 years for which there is currently no cure or treatment. It is inherited genetically. Each child of a HD carrier has a 50% chance of inheriting the gene.
I have had Huntington's Disease in my family for years. I was genetically tested in 2016 as my Dad had Huntington's. I received a positive test result which confirmed what I felt would be the case. I knew in my heart ever since I found out my Dad had it and I was convinced I had too. At this stage I was pre-manifest HD. In 2019 I was told by my HD specialist clinic that I had now progressed in to the early stages of the disease.
The disease is definitely progressing for me now with mental health changes, cognitive changes and some physical changes such as twitches and clumsiness. This will keep progressing over the years to come and eventually I will lose the ability to be able to walk, talk and will struggle to eat. Eventually I will need full time nursing care. Sadly my Dad passed away from the disease at the young age of 51.
I am so passionate about not letting the disease define me and keeping a positive outlook on life as life is short and I truly appreciate it. I am trying to tick off as many things on my bucket list as is humanly possible!! I refuse to let this disease beat me!!!
I am also really passionate about raising as much awareness and funds as possible to help towards finding suitable treatments and a cure to prevent others' suffering in years to come!!! There are many trials and exciting research programs going on which is promising and will one day find a cure or way to eliminate the disease but, it may not be in my lifetime. I am dedicated to helping others for the future to not have to go through this suffering!!
It has always been my dream to run the London Marathon for Team HDA and to raise as much money and awareness for HD as possible. I am truly honoured that my dream has come true :-)
Please find below some more info on the symptoms of HD.
HD affects 3 main areas:
- Movement - movements may happen that you don’t expect, while doing what you do want to do becomes more difficult
- Cognition - difficulties with planning and thinking
- Behaviour - changes in behaviour and personality
Some of the symptoms that can occur in each stage are below:
Early symptoms may include slight, uncontrollable muscular movements; stumbling and clumsiness; lack of concentration and short-term memory lapses; depression and changes of mood and personality.
- You may make movements that you don’t want to make (called chorea) while at the same time, it can become harder to make the movements you do want to make. For example, it might become more difficult to do up buttons or turn the pages of a book.
- You may have difficulty with organising and planning.
- You may feel and behave differently and you may become angry, irritable or frustrated.
- You may find activities take longer or are hard to finish.
- It may be harder to deal with new situations.
- You may become more forgetful.
Symptoms of the middle stage of the illness often revolve around changes in muscles and movement, although changes in behaviour may also become more significant and challenging too.
- Your muscles are likely to start making involuntary contractions and become stiff and rigid.
- This will cause your movements to slow down and your arms and legs may become clumsy.
- You may start to experience changes in how you speak as forming words becomes more tricky. Speech therapy and certain equipment can help a lot with this.
- It may become difficult for you to swallow, making eating difficult. Support from a dietician can help to make sure you keep your weight up.
- Your behaviour may change as feelings of anger, frustration or depression become quite intense. This can be quite challenging for you and those around you. It doesn’t happen to everyone but it’s more likely to happen if you start to develop symptoms in your teens.
The nature of Huntington’s means that over a period of many years, the disease progresses until the end of life
Later on, you may experience difficulties with:
- weight loss and nutrition
- speech and swallowing
- movement and stiffness
- communication
I would be so grateful for any donations (large or small) to help myself and others that are suffering as a result of this awful disease!!
Thanks so much for reading xxxxx
Now let's get training and smash this Marathon and live my best life :-) yehaaahhhh!!!!
