Lynch syndrome Patient Advocacy Group Himawari-no kai (Sunflower Association)

About us

One patient with Lynch syndrome (LS) was willing to meet other patients to talk to and share the feelings of anxiety and loneliness with people who have same disease. This led to the establishment of our group on November 28^th, 2014.
We aim to obtain knowledge about LS and support each other through meetings and activities.

 

What is Lynch syndrome?

LS is one of the most common genetic cancer syndromes, occurring at a rate of 1 per 250–1000 in the general population. This autosomal dominant disease is caused by a germline variant of the DNA mismatch repair gene. Patients with LS develop colorectal cancer, endometrial cancer, and various other associated tumors at an early age. The accurate diagnosis of LS and utilization of various risk-reduction strategies such as surveillance, prophylactic surgery, and chemoprevention can improve clinical outcomes. Unfortunately, however, LS is often missed by health care professionals due to its relatively poorly defined clinical characteristics.

 

A note from a patient.

Being informed that I have cancer makes me feel lonely and gives me anxiety.
In addition, worrying about recurrence and metastasis of cancer make me even more depressed.
When am I going to have cancer again?
The periodic examinations hurt me physically and mentally.
I’ve never met anyone who had the same disease.
I had to ask if I could meet people with the same disease, who had gone through similar experiences to mine.
 
Now, I have a group, called “Himawari-no-kai”, a patient advocacy group for people with LS.
I have a lot of peers.
Our goals are to learn how to deal with LS, feel sympathy, and understand each other though activities.

 

Contact

Iwakuni Clinical Center
Natsumi Katsumata – Liaison of the group
Kohji Tanakaya – Advocacy Director