CHRONICLES OF A LUMPY PERSON: WE STRUGGLE BUT WE DON'T QUIT- GUEST POST 4

My intention in producing this series has been to highlight the coping mechanisms of people with a variety of rare diseases. So far the stories have only been from people who have Cowden's syndrome (CS). This (as you know) is a condition close to my heart. Today following a question I got from one of my readers, I'd like to introduce Robert and Adrian to give a male perspective. Robert is American and Adrian is Australian.

The question I was asked was " does this condition affect males"? Well yes it does. Males and females with CS are affected in equal numbers but the literature indicates that males are more likely to develop conditions like thyroid cancer while females are more likely to develop breast cancer. Otherwise the syndrome appears to affect people of all races and ethnicities just as equally.

Thanks to Robert and Adrian for sharing their stories today xxx

INTRODUCING ROBERT

My name is Robert and I am a 55 year old male married with one son. We live in Detroit, USA.

As humans go we have around 25,000 genes. I was born with a mutation or quirk in my Pten gene. This mutation predisposes me to have some forms of cancer. This doesn't mean I will get cancer, just that my risk is greater. My condition ( Cowden's syndrome) essentially lies in a grey area. Not much is known about it.

Robert

My main calling in life is helping people, mainly I guess because of some of the hospital stays I have had in the past. A few years after high school I got a few jobs in the health care field. It filled my need to help people. The one job that stood out was the orderly position I had at the local hospital .The downside to taking care of people in the hospital is unfortunately they're sick and eventually I got sick.

Being new to the job I wanted to get back to the job I enjoyed working at pretty quickly. Well, I came back to the job too fast and ended up in the same hospital I worked at. Well things got worse before they got better. I went home about 3 weeks later but in that time I had contracted two different viruses. No one could even start to guess what genetically might be the cause of all this. I eventually ended up with a hole in my throat (tracheostomy) just so I could breathe.

I ended up losing my job as I could not keep up with the work and the ongoing effects of the tracheostomy. I also couldn't deal with a high risk environment where I could catch anything around me.

How I cope with the syndrome is by taking one day at a time and if I feel like I am on the rollercoaster from hell, I just try to focus on knowing it will stop sooner or later. I also enjoy working out to the best of my ability.

INTRODUCING ADRIAN

Hi I'm Adrian and I live on the east coast of Australia.

Throughout my whole life I have always had health issues and I was told I would never be able to do much. Did I prove them wrong!

On the 14^th of April 2014, I was diagnosed with Cowden’s Syndrome. Throughout my whole life I struggled with various medical issues and no one could ever find a cause of all of my problems. From the age of 8 I was in and out of hospital every year. I had problems with my right leg growing multiple tumours which were called angiomyomas.This was so serious that it even came to a stage where the surgeons told my parents that I may lose the leg.

Now at the age of 45 and 2 years into CS, I have learnt so much about myself and honestly the main things that keep me going are my boys.

Adrian and his boys

Without these two little men I think my body and brain would have given up some time ago. Now do not get me wrong I would have never done anything silly, but my day to day activities are made so much easier because of them When my now 4yr old comes up to me and says Daddy needs a hug so he can feel better, that in my opinion is the best medicine a person can get. Yes the weekly doctor’s appointments get up my nose with having to explain Cowden’s and how it affects me to every so called expert . But my boy’s rock. They are my life, they are why I am here and they are my way of coping with Cowden’s.

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And on that note I'll leave you with a cheeky photo from Adrian's boys. Have a great week,