A Alport Syndrome interview .

Ali's interview


How did all start?

Aged 4, my parents noticed blood in my urine. I was diagnosed as having a kidney infection and treated accordingly. Over the years, I've had what I'd best describe as 'grumbling kidneys,' with blood and occasionally protein in urine. Amazingly, this was never followed up until my two sons started to show the same symptoms. We were diagnosed as a family in 2014.

Do you already have a diagnosis? How long did it take you to get it?

We were diagnosed following a biopsy on my eldest son in 2014.

For what medical specialties have you been treated? What has been the most useful specialty for your?

My sons are both severely deaf and wear hearing aids. They also have kidney disease. The Paediatric Nephrology team at the LGI have been amazing, as have the audiology team.

What has been the most useful thing for you so far?

The boys were given hearing aids, which have transformed their life and experience of education.

What have been your biggest difficulties?

Many doctors have never heard of Alport Syndrome and have had to Google it during consultations.

How has your social and family environment reacted? Have your social or family relationships changed?

No significant changes

What things have you stopped doing?

Nothing! We all live life to the full as best we can.

What do you think about the future?

We are optimistic that when it comes to transplant time, this will give my sons a new lease of life. The future is less clear to me, as a female with Alport Syndrome.

So far, which years have been the best years in your life? What have you done during them?

My adult life has been thankfully very positive and enjoyable. Raising children has been a wonderful experience and I've enjoyed working in mental health.

Finally, what advice would you give to a person in a similar situation?

Don't be too frightened by your diagnosis - Alport Syndrome can be managed very well and you can live a regular life. Or an extraordinary life!


Sep 19, 2019

By: Ali

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