- 19q13.11 Microdeletion Syndrome
- Interviews
VINS51's interview
How did all start?
i had loss motion. which lasted for a week long. And one fine day when i woke up my knees started buckling & in few moments I was unable to walk and my whole body was paralysed.
Do you already have a diagnosis? How long did it take you to get it?
i got the diagnosis is 12-24 hrs but since the immunoglobulin injection was not available at that movement the late administration of the drug worsened my case
For what medical specialties have you been treated? What has been the most useful specialty for your?
i had three set of physio therapies. Slow phase where my habd movement where guided using powder & a board then a knee pad to walk and then slowly walking with out the knee pad
What has been the most useful thing for you so far?
keep check on weight gain
What have been your biggest difficulties?
my hanstring has zero power still cannot run and walk fast
How has your social and family environment reacted? Have your social or family relationships changed?
they where the pillar of support
What things have you stopped doing?
d