This is an independent Parent to Parent website for parents of children and young adults who have a rheumatology condition or a chronic pain condition.
Some of the website information relates to my home town in Perth, Western Australia. Many of the hospital references relate to Princess Margaret Hospital, which has a specialist rheumatology team.
The themes of discussion about our challenges as parents of kids in pain are universal. I hope you find something that is useful.
Each of us has a role to play in supporting our children as they adjust and adapt to ongoing health challenges. It can be a tough road at times – especially if you feel alone.
In truth there are many parents just like you – out there worrying about the same things as you do.
Maybe through this website you meet them and become part of a strong online community.
If you are looking for the latest in evidence-based information about pain management, please look at Rewire Your Pain.
People can help
Along the way there are people, resources and strategies that can help. We hope that over time we can gather those into one place so you can find what you need when you need it.
Please get in touch if you find a person or resource of genuine assistance to you and your family. This will save other families a lot of time, energy and money.
Recording our experiences
The purpose of this site is to record our experiences for the benefit of other parents wherever you are. We welcome contributions from parents anywhere in the world. Our first parent story has been sent to us from Canada.
It is very likely that your experience can benefit someone else. So why not jot down some thoughts and send them in. We would love to hear from you any time.
There are many ways you can join other parents in creating a really useful website:
- Subscribe by email for regular updates.
- Add comments to blog posts for other parents to read.
- Submit a story about your own experience as a parent of a child with rheumatology issues.
- Suggest useful resources that can be added to the website.
- Write an article on a related topic you know a lot about.
- Send in a short blog post on a topic you feel may be of interest to other parents.
- Submit information about your local support group or fundraising activity.
- Invite members of your family to write about what it has been like for them.
- Donate photos, drawings and paintings in jpeg form for use on the website.
- Talk about this website with other parents, your own family and your doctor.