” I was diagnosed with Lynch Syndrome in my mid-twenties. My GP was able to set up the appropriate screening referrals and to give me some general information about the syndrome, but the general impression I got from them was that this wouldn’t really be a problem for my life until much later. This made me feel as if I didn’t have the right to be upset or worried about having Lynch Syndrome until I was older. That all changed once I was referred to St Mark’s: from outset, I was introduced to nurse practitioners who understood the emotional difficulty surrounding such a diagnosis as a younger person and who offered an outstanding level of support for me through regular communication. They told me everything I needed to know about the syndrome, spent as much time as was required in order to do so, and sent me lots of information through the post and by email to support my understanding. No question or thought that I had was too much for them and they would investigate my queries from things like family planning to things like forums for emotional support. They have been so personable and easy to contact and even checked up on me over the phone when I had my most recent screening procedure, just to see how I was feeling. I feel so much more secure and less scared about being a Lynch Syndrome carrier knowing that I have such a great team of experts and practitioners available to support me.”
Roseanne
