I can’t believe it has been 6 months since I created the TARSS (Teens and Adults with Russell Silver Syndrome) online Facebook group. From the creation of the Facebook group I have seen positive continuous progress in the number of members, number of posts and number of comments.
We currently have 66 members from various parts of the world, Scotland, England, Wales, Ireland, Channel Isles, USA, Spain, Chile, Estonia, Argentina, Italy and Finland. The various topics that we’ve been chatting about include:
- Issue of growth hormone use
- Social issues
- Health issues
- Humorous experiences
The teenage members are finding the group a positive resource in accepting and making the most out of being a person with Russell Silver Syndrome. The older members are enjoying sharing experiences with each other knowing that most of us have gone through and experience similar issues.
I can only speak for myself but I have found the group to be a really positive step in helping to raise awareness and support for Russell Silver Syndrome after childhood. Although the group is totally independent, I am in contact with the Child Growth Foundation in the UK and the MAGIC in the USA and hope to help them further the needs of people with RSS.
Here’s to the next 6 months and more progress!!!