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  • Raising Awareness and Funds for Addisons Disease Self Help Group (ADSHG)

  • Richard

    Member
    May 22, 2019 at 3:32 pm

    Hi Guys,

    Relatively new to this site but already made welcome, so thank you.

    In 2016 (at the age of 11) my eldest daughter was diagnosed with a rare medical condition called Addison’s Disease, this came about following 4 years of illness and several misdiagnosis from medial staff. Although this life threatening condition affects about 1 in 110,000 people, my daughter is 1 in a 1,000,000 being so young, and we were one of the lucky families to be diagnosed in time. There are a lot of families out there who were not so lucky and with non-descript symptoms like Headaches, Nausea, Dizziness, Fainting, you can understand why it is overlooked on so many occasions.

    We were given documentation surrounding this disease and medication that she is required to take for the rest of her life along with an appointment to see the Endo Nurse and Consultant. The rest we have to deal with ourselves. ☹ My Wife is amazing and within two weeks knew more about the condition that the medical professionals and we signed up to the Addison’s Disease Self Help Group site. This site has been invaluable to us over the years, especially the early stages when we didn’t know what we were doing.

    I set it as my goal to raise awareness (and a little cash) for the Charity that helped us so much and took part in the Sandman Triathlon (1,000M Sea Swim, 60KM Bike and 10K Run) that was the stupidest thing I have ever done at the time, but was happy as I raised over £1,500.00 for the Charity.

    In July last year, I started 12 Challenges in 12 Months, pushing my limits beyond anything I thought imaginable. It started with a 15KM Row, then a 5K Swim, I have done a 10K Trail Run and my first Marathon. The last challenge takes place on 01.06.19 where I will be taking part in the Calderdale Ultra Marathon – 53 Miles with over 2,000M elevation and a 16 hour cut off, and of course I will be flying the flag for ADSHG Charity once more.

    If anyone would like to know more about this condition please use the link http://www.addisons.org.uk/ or http://www.addisonsdisease.org.uk/ – The more people who are aware of the symptoms, the more lives we can save. If anyone is feeling a little generous and like to throw a few coppers towards this charity, please feel free to use the just giving link. (you can also see a list of challenges done over the past 12 months to prepare me for the Ultra) http://www.justgiving.com/fundraising/pushingthelimits.

    Should you know of anyone who has Addison’s Disease – I will be happy for you to pass my details on so we can have a chat. 😊

    Thank you for taking time to read this.

  • Vicky Pixi

    Administrator
    May 22, 2019 at 4:12 pm

    Thank you sharing that with us Richard – I think what you are doing is amazing 🙂 Hats go off to you not for only raising money for a charity that really does mean life an death to you but for getting the word out there also 🙂

    Your gonna do superb in your ultra, GOOD LUCK 🙂

  • JillyMP

    Member
    May 23, 2019 at 4:34 pm

    Good Luck Richard.

    I knew very little (nothing) about Addison’s and when a disease like that is so rare, it generally is underfunded.

    You’ve really done some quite amazing challenges, and I know you’ll tackle 53 miles with everything you’ve got! 🙂

  • sharnie1

    Administrator
    May 27, 2019 at 6:58 pm

    What a great post, and congratulations on all those challenges and raising the funds for a great cause – good luck with Calderdale – I’m told it’s a great route.  And I have an ultrarunning friend who has Addison’s, so anything really is possible 👍👍

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