Dennis

BHD Personal Story: Dennis is from the USA and was diagnosed with BHD in 2013.

1. When and how did you first get diagnosed?

It was 2013.

2. What symptoms prompted the BHD diagnosis?

My brother had found out that he had kidney cancer and due to his age he was referred for genetic
counseling. It was soon after him finding out that my parents myself and and my younger brother
were soon tested. Along with my positive diagnosis both my mother and brother tested positive as
well.

3. What impact did the diagnosis have on you?

It was devastating to me. My first concern was for the health of my children. But I also had a brother
who was fighting cancer that was rapidly spreading through his body. And there was also the possibility
that I could have the same disease in my body as well.

4. Have you explained BHD to family members?

Yes, numerous times.

5. What implications do you think it has had on your family?

It has brought us closer together. After the dust had settled, it was discovered that along with me a
total of 6 of us were diagnosed with the bad gene.

6. Where did you go for more information on BHD syndrome?

The BHD website. Also, Both the geneticists and Dr. Peter Langenstroer at Froedtert Cancer Network
were great at informing our family about BHD.

7. Do you have advice for people who are looking for a diagnosis?

If you have any reason to believe that you may have BHD get tested ASAP.

8. If you have children, has BHD affected you as a parent? E.g. telling your children, starting a family, genetic counselling.

I feel the guilt every day knowing that I passed this disorder down to my oldest child. Personally, I would wait to test any minor children till they turn 18, unless they are having problems.

9. Do you have any tips and advice for caregivers?

Be kind and patient, and try to learn as much about the disorder as possible.

10. What are your current symptoms?

All I have are the skin bumps.

11. What treatment are you having, and have you had?

I am under the care of a Urologic Oncologist (Dr. Langenstroer) with annual imaging, ultrasound and
MRI.

12. How did you find a doctor?

With the diagnosis of my brother.

13. What has been your experience of the healthcare system and healthcare professionals?

Well, anytime I tell a new Dr. about BHD it is a learning experience for them. My primary Dr.
(Randall Vosters MD) has been very open to learning both from me and from the medical world.

14. Has BHD had any health insurance implications for you?

Not as of yet.

15. What are your thoughts for the future?

As for myself, I take one day at a time, and I take nothing for granted. My life is in God’s hands
and I accept that wholeheartedly. I dread the day when my son wants to start a family. Will he
be able to afford in vitro fertilization? Will his significant other want to conceive that way?

16. What advice would you give to someone who has just been diagnosed with BHD?

Take a deep breath, and just roll with it. Lean on loved ones, talk to whatever God you worship,
and learn as much about BHD as possible!