Dear Amber Lynn, I am pleased you found my writing helpful, but profoundly disappointed and alarmed by the awful journey you have had to endure in reaching the correct diagnosis.

Well done for being so strong and persevering. I can understand this has been very upsetting, sad and frustrating for you.

When you feel able, I think it will be helpful if you could also write about your experiences too.  As you have discovered, patient stories can be empowering for fellow patients, and also serve as an important source of knowledge for doctors.

Please also feel free to write to me personally. I am interested to know how you fare and the treatment options you are offered, and I would like to keep in contact. Please continue to be an expert patient, and I hope you will be feeling better soon.

Best wishes, Jon Danzig