- GM1 Gangliosidosis
- Interviews
Johnny's interview
How did all start?
This is all in respect of my now deceased daughter born 07/03/06. In retrospect, disease/condition symtoms became apparent in about 3rd month.
Do you already have a diagnosis? How long did it take you to get it?
Yes. From the 3rd month of first symptoms approximately 4 months.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Palliative care only, no treatments available.
What has been the most useful thing for you so far?
Early diagnosis.
What have been your biggest difficulties?
No treatments, worst possible prognosis, grief.
How has your social and family environment reacted? Have your social or family relationships changed?
Badly. Yes.
What things have you stopped doing?
Travel.
What do you think about the future?
At the time, my daughters impending death & the effects on the rest of my family.
So far, which years have been the best years in your life? What have you done during them?
Years 1 through 47.
If you had to describe your life in a sentence, what would it be?
Diverse.
Finally, what advice would you give to a person in a similar situation?
Talk to others, especially family.
