- Recurrent Respiratory Papillomatosis
- Interviews
tbrock's interview
How did all start?
I was diagnosed in 2017 with RRP. After spending over a year seeing many specialists, it wasn't until I went to the ENT doctor who diagnosed me.
Do you already have a diagnosis? How long did it take you to get it?
It took over a year and many many tests later to get my diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Since my diagnosis is 2017, I have undergone 4 surgeries and getting ready for my 5th. My last surgery was in 2019 and I have been in remission until recently. I am aware of the in office procedures now being offered as treatment methods, but I am not a candidate for that because I am not very tolerable of the scope. I detest it each and every time. For me, surgery under general anesthesia has been my go to.
What has been the most useful thing for you so far?
Knowing that my doctors and treatment team are knowledgeable and familiar with the disease
What have been your biggest difficulties?
sharing the disease with others without explaining the full details of what it is, how I got it, etc etc
finding others who share the same difficulties and struggles while living with the disease
trying to decide how to move forward professionally when it is difficult to talk and breath
How has your social and family environment reacted? Have your social or family relationships changed?
I am constantly asked "what's wrong with your voice"
I limit social interactions because talking is a strain. It's really difficult to project my voice in social settings in order to sound "normal"
What things have you stopped doing?
I've reduced my social interactions. I've stopped engaging in sporting events and large group activities that require a lot of voice usage.
What do you think about the future?
I am nervous about my future
So far, which years have been the best years in your life? What have you done during them?
I have been in remission since 2019 and have been assigned new projects at work and given more responsibilities at work. But now, I am preparing for my 5th surgery and really can't say whether or not this will be the last one.
What would you like to do if you didn’t have your condition?
I would like to attend sporting events and be able to yell for my favorite teams and have fun with the others without being asked "what's wrong with your voice?"
If you had to describe your life in a sentence, what would it be?
My life right now is at a standstill
Finally, what advice would you give to a person in a similar situation?
Find others who share your experiences, make sure you are comfortable with your doctor and treatment team. try to develop a support team. Do your own research and find out as much as you can about the disease.
