- 19q13.11 Microdeletion Syndrome
- Interviews
Rosemcs's interview
How did all start?
I was spray painting my dresser in the wash room which I thought was well ventilated. When I finished, I went inside and noticed my lips where turning black from the toxic paint. That was in the late 80's. I worked in the printing industry for several years and they used many chemicals to make the printing plates and to expose the negatives. After giving birth in 1999, they had a chemical mix up in the negative room. I was in a meeting and through the air vents, I started to notice my throat was itchy and closing, it was hard to breath. I was sent to the Dr that day and given a shot of Benadryl. Ever since then, it has been down hill and getting worse due to the many chemicals people use every day that they consider normal. Why can't they all use natural chemicals and why don't they consider MCS a disability? It's obvious we can't live in the same capacity as others.
Do you already have a diagnosis? How long did it take you to get it?
No
What has been the most useful thing for you so far?
I used to use the Benadryl dissolve strips that worked like a charm but they discontinued them. I now use Clairaton dissolve tabs but they don't work as well as the strips :(
What have been your biggest difficulties?
Life itself, not knowing where and where I'm going to walk into a room smelling of chemicals and not having meds on me. Not being able to live a normal life do to this stupid allergy.
How has your social and family environment reacted? Have your social or family relationships changed?
My whole life has changed, I have no social life because I never know when I'm going to be affected. I don't really go visit friends or family because I don't know what and when they are going to clean. I eat mostly take out because I might have a reaction at restaurants. I have to pay at the pump because they clean most gas stations with chemicals.
What things have you stopped doing?
Everything....
What do you think about the future?
The US needs to declare use of natural chemicals only not just for people with MCS but for the environment as well
So far, which years have been the best years in your life? What have you done during them?
Life before giving birth
What would you like to do if you didn’t have your condition?
Live life, travel, not live in fear that I can die or have a bad reaction just picking up pizza or going out to dinner.
If you had to describe your life in a sentence, what would it be?
Girl in plastic bubble
Finally, what advice would you give to a person in a similar situation?
Pray.....
