BHD Personal Story: Filippo Mendola is from Italy and was diagnosed with BHD in 2009.
1. When and how did you first get diagnosed?
In 2009, due to a pneumothorax after the first operation of enucleoresection (7 masses) of kidney carcinoma. A second resection operation (12 masses) took place later that year.
2. What symptoms prompted the BHD diagnosis?
Symptoms of a varicocele. Then it was discovered that the varicocele was secondary to bilateral kidney tumor.
3. What impact did the diagnosis have on you?
It has changed my life and I have downsized my professional projects.
4. Have you explained BHD to family members?
Yes, they are aware.
5. What implications do you think it has had on your family?
A different perspective in facing life and different diseases.
6. Where did you go for more information on BHD syndrome?
The oncology department of the Reggio Emilia Hospital.
7. Do you have advice for people who are looking for a diagnosis?
Yes, in Italy, I recommend L’Istituto Carle di Cuneo for genetic testing.
8. If you have children, has BHD affected you as a parent? E.g. telling your children, starting a family, genetic counselling.
I don’t have children.
9. Do you have any tips and advice for caregivers?
10. What are your current symptoms?
Just a series of abdominal pain and a mild renal impairment. I have a recurrence in the right kidney. I was operated twice, both in the right kidney (7 carcinomas), and the left kidney (12 carcinomas).
11. What treatment are you having, and have you had?
No treatment, just follow up every 6 months.
12. What has been your experience of the healthcare system and healthcare professionals?
I had kidney surgery performed by a great urology professor of Bergamo, I deposited at the IRST in Meldola the tumor masses for a possible study of a vaccine.
13. Has BHD had any health insurance implications for you?
14. What are your thoughts for the future?
My future will surely be short.
15. What advice would you give to someone who has just been diagnosed with BHD?
Not to miss a second of one’s life.