- Recurrent Respiratory Papillomatosis
- Interviews
Paul's interview
How did all start?
I was diagnosed with Recurrent Respiratory Papillomatosis in May of 2001 at the age of 36. My doctor has no idea how I was infected as I have been with the same partner, my wife, since 1986 and he also does not adhere to the belief that it is sexually transmitted due to the low incidence of the disease. It became apparent when I was trying to record a report of 15 minutes in length but had to stop the recorder about every two minutes to clear my throat. I went to an ENT and he diagnosed me and I was in surgery the following day.
Do you already have a diagnosis? How long did it take you to get it?
Immediately upon going to an ENT.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Surgical removal of the papilloma and laryngotracheal reconstruction. I also had injections of Cidofovir in an attempt to stem the growth of the papilloma. It was successful for a much reduced incidence of the papilloma for about three years.
What has been the most useful thing for you so far?
Probably the laryngotracheal reconstruction which improved my speech for nearly ten years. It has been failing now for the past six months and my speech is much worse; but, I did get ten years so that is good.
What have been your biggest difficulties?
Breathing. I have shortness of breath and poor speech but breathing in general is the worse issue.
How has your social and family environment reacted? Have your social or family relationships changed?
I can not be understood by most people so social interaction is very limited. It has been affecting my work for the past year or so.
What things have you stopped doing?
Speaking on phones and on online meetings. In person speaking still works about 80% of the time.
What do you think about the future?
It isn't looking good.
So far, which years have been the best years in your life? What have you done during them?
The three years following the Cidofovir treatment was the best. I could do almost anything.
What would you like to do if you didn’t have your condition?
Go on hikes again, ride my bike, things that require a better ability to breath.
If you had to describe your life in a sentence, what would it be?
My life is okay, but depressing.
Finally, what advice would you give to a person in a similar situation?
Try to look for the positive things -- you are still here, you can still interact and make a deference. You can be there for others and help support those worse off than yourself.
