- Tuberous Sclerosis
- Interviews
AMusicGirl's interview
How did all start?
Well I know this may sound cliche but I had this disease since i was 4 1/2 years old and I don't remember much just being told over and over again you have Tuberous Sclerosis and all the imaging and all backed it up.
Do you already have a diagnosis? How long did it take you to get it?
Yes Like I said before I was diagnosed at 4 1/2 months old.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I've seen Neurologists, Neuro surgery, Urology, Nephrology, Oncology so far it's been Urology since my kidney's have been giving me the biggest issues for the longest time. Also Neurology recently I have a fantastic doctor at Scripps and I wouldn't want to trade him for the world. Also I see a great Pulmonary doctor for my LAM I was just diagnosed.
What has been the most useful thing for you so far?
To take deep breathes and just go with it and to take it day by day because new things with this disease keep popping up new symptoms like recently I was diagnosed with LAM a mild case of it.
What have been your biggest difficulties?
Dealing with my kidney's I think is the biggest issues right now and trying to figure out why I had 5 seizures in a span of a week which I've never had that happen before that many in that small of a time. Also my anxiety has been really bad.
How has your social and family environment reacted? Have your social or family relationships changed?
Well my family has always accepted me. But there has been challenges between my mother and I about this disease and her making my decisions which kind of upset me at times. But other than that there isn't much change to it.
What things have you stopped doing?
I have come to the point where I might have to stop working because it has come overwhelming with how many surgeries i've had in the last year two that have nothing to deal with TSC but one coming up does.
What do you think about the future?
I think it can be very bright as long as I have my husband beside me.
So far, which years have been the best years in your life? What have you done during them?
I think the last 3 years or so any of it with my husband in it well I was dating I got engaged and then got married and now I've been married for a year now
What would you like to do if you didn’t have your condition?
Probably live a more healthier life.
If you had to describe your life in a sentence, what would it be?
Very adventurous and a life worth living
Finally, what advice would you give to a person in a similar situation?
Just take it day by day that's what I do and when you need to go to your happy place and think of at least 5 things you are thankful for every day. Always remember you are not alone
