I’m a 40-year-old Englishman living in Bellingham, WA. I met my wife, Michelle, who is American, in Australia in 1997. We have two kids – Sam (7), and Madeline (4). I’ve been in the US for ten and a bit years and work from home as a freelance writer, focusing mainly on golf (I used to teach the game).
At 18, I was diagnosed with multiple sclerosis, but I was born with a very rare condition called alkaptonuria (about 1,000 cases worldwide I think) which causes pretty severe arthritis from the mid-30s on. I’m at the National Institutes of Health this week to have a barrage of tests, the results of which will be added to the AKU knowledge base. There is no known cure at the moment, but the more information that can be gathered the likelier doctors are to find one. The tests will be carried out by Dr. Wendy Introne, a pediatrician and biochemical geneticist who performs clinical research on rare genetic conditions at the National Human Genome Research Institute.
I will be staying at the NIH for four days and will hopefully have time to post something about the experience every day. The hope is that by publishing this blog, others with AKU will be encouraged to visit the NIH for the same tests.


2 Responses to About

  1. Ruth Clark says:

    Hey Tony x What an amazing blogg you have written. I remember hearing about alkaptonuria so many years ago in Barnmead! Really hope your tests add to the body of information about the condition and help fellow sufferers. I have been helping the researchers with the condition I have and feel I owe it to all those with my condition and those yet to be diagnosed, to help in any small way I can.
    Hang in there, give my love to Michelle, Sam and Madeline, Mum and Dad have read the blog to and are really impressed, although Mum got upset, bless her. Sending all our love, hugs and wishes, Ruth, Emily, Nathan, Stuart and Barbara xxxxxxxxxx

    • tonydear says:

      Condition Ruth? Condition? I didn’t know about any condition. You don’t have to tell me here of course, but I’d absolutely like to know what all that’s about. Last day today, and it’s probably the busiest of all. I have a few minutes here to check emails and all that. Thanks for your comment. Love to the kids and parents. Tony x

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s