Joseph is 53 years old and has a history of severe Haemophilia A with high-responding antibodies to human, porcine and bovine Factor 8. The challenges of living with complex Haemophilia were further deepened by multiple hepatitis and HIV treatment derived infections during his first exposure to new antibody bypassing therapies and the first exploration of immune tolerance therapy in the early 1980’s. Complications from the infections eventually forced Joseph’s retirement from the local Education Department where he held a senior role within finance, IT and administration.
After surviving such life-threatening events Joseph has played a lead role as a campaigner, pushing at a government level to establish improved support for those infected & affected, accompanied by a Public Inquiry into the contaminated blood scandal.
As someone who has experienced first-hand the mental challenges of living with Haemophilia, life-changing and at times life-threatening viral infections and physical/neurological/psychological injury, Joseph offers comprehensive experience and knowledge as a trustee to help HBDCA achieve their goals of providing long-neglected psychological support to the Haemophilia community.
Nina started to learn and invest in haemophilia in 2012 when she joined the team at The Haemophilia Society UK as Head of Fundraising and Communications. She then learnt that haemophilia was actually in her family and even made national newpaper headlines during the war! Nina felt passionately about ensuring that everyone in the community was looked after focusing her efforts on women by starting the on-going campaign, Talking Red, and giving the Local Groups focus and resources to enable them to thrive and support their community. Nina then went on to work with ex trustee, Jamie O’Hara, at HCD Economics launching CHESS, a study that shows the social and economic impact that haemophilia has on the UK and beyond.
Since then, the pair have gone on to launch several of these studies that now influence charity and pharma’s funding and service delivery. Aside from that Nina runs an events company and enjoy everything that living in London has to offer.
Jackie Brooks previously worked full time at a major retail bank for the past 30 years Additionally, she spent 24 years caring for her husband who sadly passed away 4 years ago. As a previous Carer, Jackie understand the frustrations, lack of support and diminished quality of life affecting the client and their family.
HBDCA will be a dedicated counselling service, which will provide one-to -one support and assist clients and their families, understanding the impact of their debilitating condition and to enhancing their quality of life.
Passionate about the bleeding community
I was diagnosed with type 3 von Willebrands disorder at the age of 6 months. I spent much of my childhood at hospital receiving clotting factor products to treat my bleeds. These would range from gum bleeds and bad bruising to joint and muscle bleeds, with my right ankle becoming a target joint. As I hit puberty I started to have periods and would sometimes need monthly blood transfusions as they were so heavy and lasted for weeks. I was put on hormone pills as a teenager to control them and have remained on them ever since. The heavy periods caused endometriosis and I also had bleeding follicles on ovulation and cysts that ruptured causing internal bleeding. Despite that I did ok and completed A Levels and headed to university.
It was after my first year there that I was referred to London to have an operation at St Thomas’ and whilst there found out I’d got Hepatitis C from contaminated blood products. I’d not been told by my own haemophilia treatment centre.
Some years later I cleared the virus after two lots of Interferon and one lot of Ribavirin. At that point I was still working and had built a career in IT despite health issues from both the Hepatitis C and the treatments. I was not always able to work due to fatigue, brain fog, pain, insomnia, depression, mood swings and hot flushes but worked when I could.
In 2003 I married my husband Ade having moved to Worcestershire to live with him 3 years prior. We had planned a family but Ade and I struggled to conceive and needed IVF which failed twice, due to a lack of eggs and one failed embryo transfer.
In 2007 I had to take ill health retirement from my career as an IT Consultant, facing up to the devastating effects of the virus and its treatment.
During this time my bleeds were fairly frequent and I was treating at home with Haemate P and managing them well. My right ankle had deteriorated and I had severe arthropathy. In 2014 I had an ankle fusion at Sheffield.
A couple of years later we tried once more to have a family with a friend who volunteered to be a surrogate and carry our baby for us. Sadly this didn’t work due to my producing no viable eggs and an existing frozen embryo not implanting. I discovered at this point that the interferon I took to rid myself of the HCV to have a family could cause infertility.
I have been an active volunteer with the Haemophilia Society over the years working particularly on projects to raise awareness of bleeding in women and getting the best treatment options for those with haemophilia. I have written a blog for many years describing my experience of living with a severe bleeding disorder.
I have always been open about my having von Willebrands disorder and my infection with HCV and for me this has led to advocating for those who are unable to be. I have struggled with many mental health issues as a result of contaminated blood, on top of those already present as a result of living with a life long disorder and disability. The need for long term, dedicated support is clear and yet I have found it difficult to access any.
I believe the need for psychological support for those in our community is damn obvious and long overdue. I am passionate about getting this in place as soon as possible to mitigate the unprecedented impact of the trauma we have been through. Providing free and easy access to psychological therapies and encouraging the uptake of this support is incredibly important. I am privileged to be helping HBDCA towards this aim.