A strong Perthes community

The majority of people we talk to, like us, and other Perthes parents, had never heard of Perthes, yet at the same time, once you start talking to people, it’s also surprising that a few will also say ‘I know someone who has that…’

Perthes Facebook group (The Perthes Association)

For something rare, there are families joining the Perthes UK Facebook group, nearly every week!

We have found the Perthes Association a great support organisation, especially for introducing us to other families through the Facebook group. People share their worries, ask questions, seek advice, and importantly, and the best bit for me, share encouraging stories like this:

A recent newcomer started a thread to see where everyone lives – through that I found two more families that live close by and we now have a whatsapp group going, and we hope to have some sort of meet up soon. If you live in or around Berkshire and would like to join this local group of Perthes families, please contact me!

Perthes Family Cycle Challenge – April 2018

The Facebook group also includes adults who had Perthes when they were children. For me, they provide insight from sharing their experiences, and I’m often inspired by them too.

A super example of this is Carl, a true Perthes warrior, who has since become a family friend. He has taken it upon himself to organise Perthes family fun days, which we attended last year up in Derby. It was a great day, with lots of families meeting up and taking part in a cycle challenge around Markeaton Park, followed by lunch. This type of event has so many benefits. It’s good for the kids to realise they are not alone, and helpful for parents to also realise that we all ask the same questions, have the same fears and concerns, and of course it presents the opportunity for raising awareness and sponsorship.

Carl, himself, has completed some amazing cycle challenges, as well as climbing Scafell Pike since having had a hip replacement a couple of years ago. He also pointed out to me recently that when he was a child, social media didn’t exist, and finding other kids and families with Perthes was a lot harder to do. We are fortunate, in our digital era, to be able to so easily find and connect with others, both locally and globally.

Pertheskids.org

Global connection leads me nicely to a recent discovery of this organisation, Pertheskids.org, founded in the US, but putting their arms around the global Perthes community, which I think is so important. I’d love to see the various charity organisations around the world partner more as we all have a shared goal to find out what causes Perthes and be able to put a stop to it.

The website is full of useful information and even has a ‘locator‘ tool, enabling you to find and connect with families local to you, but also from all countries around the world. Being half Swedish, I was interested to see who had registered from Sweden. I have since connected with a Swedish family who live close to where my family come from, and when we’re next visiting, we will try and meet up with each other.

They also organise Perthes summer camps, with the first UK camp having taken place in Winchester last year. I’m not sure if we can attend the camp this year, but we will try and make it next year if not. It sounds a lot of fun with a variety of exciting activities.