Sharon Lee's interview
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How did all start?
Cannot really pinpoint the start. Have been extremely tired since a teenager, but the symptoms became extreme around 2007.
Do you already have a diagnosis? How long did it take you to get it?
Yes. Idiopathic Hypersomnia. It took 4 long years of tests before a diagnosis in 2011
For what medical specialties have you been treated? What has been the most useful specialty for your?
?
What has been the most useful thing for you so far?
Duromine has made the biggest difference drug wise, but it is an appetite suppressant/stimulant that can be addictive, it can cause extreme weight loss, it’s not really favored by doctors, and it is extremely expensive.
What have been your biggest difficulties?
The frustration of not being able to continue my sport, and the ignorance of people in general about this condition. My family
How has your social and family environment reacted? Have your social or family relationships changed?
My family are aware of my IH diagnosis but fail to understand it or even try to understand it. I tell very few people outside my family circle. My relationships haven’t changed but sometimes I feel angry about the ignorance of my family and their indifference in becoming familiar with it.
What things have you stopped doing?
Surf lifesaving training and competition, my biggest love. Staying out late.
What do you think about the future?
I don’t dwell on it.
So far, which years have been the best years in your life? What have you done during them?
The 20 years that I was a competitive Surf Life Saver. I was a multiple Australian Gold Medallist. Unfortunately the latter part of those 20 years became a huge struggle. I gave up about 5 years ago.
What would you like to do if you didn’t have your condition?
Continue in the sport.
If you had to describe your life in a sentence, what would it be?
Blessed.
Finally, what advice would you give to a person in a similar situation?
Don’t beat yourself up over what you can’t do or love doing. Find an alternative that is manageable and learn to enjoy something new.
