- Alport Syndrome
- Interviews
Teresa's interview
How did all start?
17 years ago I had a lot of blood in my urine, diagnostic testing was inconclusive. 12 years ago was advised I had bilateral hearing loss, 4 months ago got a nephrotic syndrome diagnosis after swelling in my legs and face and then referred to nephrology where my consultant suggested Alports and kidney biopsy confirmed this. Still awaiting DNA results.
Do you already have a diagnosis? How long did it take you to get it?
No and ongoing regarding DNA and type of Alports
For what medical specialties have you been treated? What has been the most useful specialty for your?
Nephrology identify this immediately
What has been the most useful thing for you so far?
Alport Syndrome Uk support group and Alport warriors group on Facebook
What have been your biggest difficulties?
Lack of information
How has your social and family environment reacted? Have your social or family relationships changed?
I’ve kept information to close family as come from a large family and am aware there will be implications for the rest of it’s confirmed there is an inherent link
What things have you stopped doing?
Been physically unwell
What do you think about the future?
Trying to be positive and raise awareness
So far, which years have been the best years in your life? What have you done during them?
We only get one shot so I try to live life to the full
What would you like to do if you didn’t have your condition?
Travel more
If you had to describe your life in a sentence, what would it be?
Spontaneous
Finally, what advice would you give to a person in a similar situation?
Speak to others with your condition, a problem shared is a problem halves!
