I have recently got back from an annual charity weekend away. This is an event which I have been attending with my parents, pretty much every year since I was 8 years old.
The charity is Goldenhar UK, a group supporting people living in the UK, who are born with the condition Goldenhar Syndrome / Hemifacial Microsomia. These are two conditions on the same spectrum, characterised by bone and tissue not developing fully on one side of the face. While many of the characteristics of these two conditions are the same, including jaw bone not developing properly, smaller or missing ear on the affected side, to be classed as Goldenhar and not HFM, there needs to be other issues, such as problems with the spine and neck, or other health related issues such as problems with the heart or kidneys. As mine is purely my face affected, I am classed as having hemifacial Microsomia.
Nonetheless, this charity group has become a safe space for many families affected to connect. Throughout the years, I have made friends with others around my age. This year however, was the first time I have been able to meet up with them all in person since before the Covid 19 Pandemic.
Due to it having been a few years since the last Goldenhar meetup, this weekend felt particularly special to me. In this space of time, me and a few of my close friends have gone through some big operations with regards to the condition and therefore it was nice to be able to share some of those experiences with one another in person.
A big part of the charity weekends is getting to socialise with others who can relate to having gone through many of the same experiences. Many of us have gone through low self esteem surrounding our looks back in school. However, it was really nice to see how many of us are now getting out of that stage in life and becoming more confident in ourselves.
While the group has been really valuable to me growing up, it has always been a weekend in the year where I truly feel that I fit in. During my teens, when I was struggling the most, It was both an escape and a place where I could feel the real and confident version of myself. It is a community group where we all have uneven ears, jaws that don’t look symmetrical, scars from operations and no hearing in one ear.
I will also mention that the weekends are also really helpful for the parents and siblings of the person affected by the condition. It can be easy to forget how the related mental health struggles and countless operations have a big effect on close family members too.
While I was in hospital going through my major jaw operation a year and half ago, both me and my mum received so much love and support from other families / friends from the support group. I remember when I was going through a really rough patch in the hospital, my friend’s mum was always messaging my mum for updates and giving advice on what they had done in the past going through similar operations.
Ultimately, having a rare facial birth defect can feel quite isolating at times. However, I feel very lucky to have made friends from it. It takes away that feeling of no one understanding what you are going through.
I hope you enjoyed reading this post. It was a slightly different style of post to some of my others, but hopefully you have learnt something about Goldenhar Syndrome and the charity group which has supported me throughout the years.
Becky. X
