Rare Men's Group David Ross

We are excited to share this very first blog post in honor of our first ever Men's group coming up this week! By sure to check it out and join the Rare Men's Group!

Here is David Ross first blog post in his own words!

My first blog starts with a letter from my mother. She had given me a letter from her doctors. I had to decide if I would get tested for the same rare disease that she had; Cowden Syndrome. It is something that affects every 1 in 200,000 people. This diagnosis carries an increased risk of getting certain cancers, autism and developmental delays.

At the time, I remember feeling that I wouldn't be getting tested. I certainly thought I felt OK. but there was also some denial about my mum's declining health and the fact I couldn't do anything to help her or save her. A year later she passed away and I realised that I had to get tested!

The support I received from the doctor and genetic counselor was great. They got me tested quickly and I was found to have the same condition. Straight away I decided to get my daughter tested. Fortunately she was found to not have escaped the rare condition.

The changes upon my diagnosis were more emotional and mental than physical. I was still grieving the loss of my mother when I found out I had the same rare disease as her. It was very scary, uncertain, worrying and overwhelming. I had to learn more about this condition but also balance out dealing with the emotional side. It was the start of a different stage of my life! My mother wasn't around any more for that support system, and I soon realised the buck stops with me!

I joined support groups online and met many other people with my condition. This really helped me to cope with the new change in my life and how it could impact me. I felt the need to have some control in my life due to the diagnosis combined with the loss of my mother. Having that support from medical professionals was just what I needed to help cope with the changes in my life!

I'm ready to embark on a new journey by opening our group to the APJ region and anyone else who wants to join us! Please save this time in your calendar so we can support each other as we walk this rare journey together. Whether patient or caregiver, Cowden Syndrome, or Sickle Cell, we all have common experiences and can help lift one another up.

Join the Asia Pacific Mental Health Men's Group here: Click Here

Here is the link in case you need it: Click Here

See you there!

~David Ross, Rare patient, advocate