When I first discovered that I had JHD I don’t think it really hit me straight away and I tried to convince myself that I was going to be OK!
I was actually undergoing psychological counselling, when my Dr. Suggested I tested for the condition.
I underwent the tests and received the devastating news, when I was with my best friend Serina.
All of this seemed to be made even more unfair, as my father had been suffering from the disease and my results came the day after his funeral!
For a while after diagnosis, I found it very difficult to motivate myself and simply lay on the sofa for days at the time, not being able to be bothered to even get dressed or wash myself! After speaking to professional team in charge of my personal wellbeing, we decided after much thought, that it would be possible for me to become more independent. The first few weeks in the flat was quite difficult, struggling to come to terms with everything. However, due to the fact I had my carers having to dress, feed, wash me and help with everyday tasks, I soon grew used to being independent and now enjoy having my own space.
I try and stay positive and never give into my condition. I have a very strong faith in God and knowing that God is by my side at all times gives me the strength and courage to continue to live a full life. I go out almost every day and make sure that I always have something planned or to organise.
I am a very positive about everything and I am always ready to receive life with an upbeat outlook.
I live life with a sense of adventure and with an attitude of gratitude.
I never complain and I have a really excellent sense of humour. I have been told by many that I am very mischievous!
Do you know what … They are right?
I’ve experienced many things in my life, just a few being indoor rock climbing, horse riding, archery, canoeing, and recently I had a fabulous day at the Church WINNE watersports centre. My favourite sports used to be hockey and netball.
Things I want to do
I want to go on holiday abroad this year and also I am looking forward to going to Blackpool to see the illuminations.
I also want to go to Alton towers again and Waterworld in stoke on Trent.
“Where there’s a wish there’s a way”
Sheenam has Juvenile Huntington’s Disease, also known as JHD.
“I set up Sheenam’s Wish to enhance the quality of lives of young people with Juvenile Huntington’s Disease. This website provides information on the disease and ways of supporting us”.
Many Thanks, Sheenam x
Sheenam’s Wish is to help others also with JHD, raising funds and providing some well-deserved treats for patients and carers of this devastating neurological condition. The disease is hereditary and there is currently NO cure.