THS Mental Health Initiative
So Pho is raising money for The Haemophilia Society
Story
Hiya!
I am one of the newer staff members at The Haemophilia Society! To be honest, when I first joined, my knowledge of bleeding disorders was limited to the surface level and I have been lucky to not have a long-term illness/disorder. (Find a simplified explanation of The Society and bleeding disorders below!). I recently attended my first newly diagnosed weekend event with The Society and it was an eye-opening experience; I became immersed in the community and was able to listen to parents' first-hand accounts of what living with a bleeding disorder/having a child with a bleeding disorder is really like. I learned about the toll it took on the physical and mental health of the person with the disorder and their family and friends.
Unfortunately, standards of care for bleeding disorders are inconsistent among the haemophilia centres with regard to mental health support for people with bleeding disorders (PWBD)
The Society acts as a hub; providing support and information and advocating for anyone with or affected by a bleeding disorder (PWBD). Our events are centred around empowering PWBD and bringing together members of the community; improving
What I want to do with this fund is help raise money to support The Haemophilia Society's mental health initiative.
As someone who has struggled with mental health, playing video games, music and drawing have always been my outlets. I will be streaming video games on Twitch at https://www.twitch.tv/thepsycaticone.
Please consider donating and sharing with your friends, family and colleagues. ALL DONATIONS WILL GO TO THE HAEMOPHILIA SOCIETY
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The Haemophilia Society and Bleeding Disorders
When you have a bleeding disorder, your body lacks a protein which enables blood to clot, this can present itself in Haemophilia A, Haemophilia B, von Willebrand’s disorder, and other rare bleeding disorders. It can be genetic or a result of a gene mutation, meaning a diagnosis can show up out of the blue; it can only be passed to your biological children. A person with a bleeding disorder (PWBD) can experience both internal and external bleeds leading to joint damage, arthritis and other ailments if left untreated. There are also implications on mental health, confidence, personal relationships, and family planning.
Finding out that you or a family member has a bleeding disorder can be a stressful and isolating experience and there is an ever-increasing demand for youth services and support around the country. PWBD are often left out of school activities, or isolated from other peers due to common misconceptions about their disorder, and a fear of the unknown. They are also unlikely to meet others with bleeding disorders unless they attend their Haemophilia Centre for treatment. Being socially isolated can have a significant impact on confidence and self-esteem with potentially devastating long-term implications on one’s health and wellbeing.
Additionally, needle anxiety is common, especially within PWBD who must inject themselves with treatment multiple times a week or even daily. Many people will try and avoid treatment in their younger years to avoid feeling different and isolated from peers which can result in bleeds which may lead to permanent joint damage. PWBD are also ostracised by teachers who may not understand why PWBD are missing school for hospital visits. There are further effects with age; building personal relationships and family planning can seem difficult and daunting.
The lack of accessible opportunities for young people with a bleeding disorder is preventing them from gaining important life skills and taking part in activities that will prepare them for adulthood.
The Haemophilia Society supports people affected by bleeding disorders, providing relevant knowledge and information to connect people with local groups and communities, from advocating for higher standards of care and treatment, to campaigning for local issues, we are here to support and drive a more engaged and healthy community. We are members of both The European Haemophilia Consortium and World Federation of Hemophilia. The EHC, based in Brussels has over 40 member countries. The World Ferderation, with almost 150 member countries across the globe. We support their Cornerstone Programme that supports new member countries with medical professionals trained as specialists in bleeding disorders.
Our free-for-member programmes tackle these issues by bringing together a “disconnected and niche” community. We host newly diagnosed weekends to provide support to parents who have recently found out that their child has a bleeding disorder. Our five-day youth camp offers around 50 young people the chance to spend time away from home, gain confidence, learn new skills, and make lasting friendships with members of the community in a safe, supported environment. Lastly, we are hosting a series of info sessions that include information about Rare Bleeding disorders and Talking Red, which focuses on raising awareness for women and girls with bleeding disorders and distigmatising conversations about periods.
Our programmes aim to empower young people to realise their own potential and raise their aspirations.