PAWS-GIST - A new UK initiative for rare GIST cancer in Young people

Having children overwhelms you with feelings of joy. Despite months of preparation there is nothing that you have ever done before that can match these wonderful feelings.

If your child is diagnosed with cancer there is nothing that has ever happened before that can prepare you for the overwhelming devastation and despair that you feel.

To discover that there is no cure for your child’s cancer, there is no specialist group with expertise in your country and that the only research into their disease is thousands of miles away in another land makes you feel very alone.

This is how we felt In January 2010 when our 15 year old daughter Eve was diagnosed with Paediatric Wild-type GIST.

Overnight our lives changed 

To combat this attack on our lives we have formed a specialist clinical focus group consisting parents, GIST Support UK and some very special doctors, led by Dr Ramesh Bulusu of Addenbrookes hospital in Cambridge.

Our initial reaction was to seek help from a brilliant team of doctors at the NIH in the USA where they have set up a clinic for Paediatric & Wild-type GIST.

We also came into contact with a fantastic patient support group in the UK called GIST Support UK. They helped us to gain some perspective and gave us hope. They introduced us to other paediatric GIST patients and parents in the UK.

GIST Support International (GSI) has set up an email listserv dedicated specifically to wildtype gastrointestinal stromal tumor (GIST) in patients of any age, plus their family and friends. To join the list please click here.

Wildtype GIST means GIST without muations in the genes for KIT or PDGFRA. Almost all GIST in patients younger than age 21 is wildtype, as well as a large percent of GIST in patients younger than 40, and about 10% of GIST in older adults.

Patients, family members, caregivers, riends, and interested others are welcome to join! GSI's aim is to provide patients support and a place to talk and exchange useful information about wildtype GIST and its treatment.

The National Institutes of Health (NIH) and its branch the National Institute of Child Health and Human Development have announced an exciting initiative for those affected by pediatric GIST, Carney Triad, GIST from Carney-Stratakis syndrome, or other wildtype GIST: NIH Clinic for Pediatric and Wildtype GIST. In June 2011 the pre-clinic meeting of the 7th Pediatric and Wildtype GIST Clinic at NIH took place and we are delighted to publish a report of a representative of GIST Support International (GSI) who has attended the meeting.