Committee Members

Lisa Stedman Lisa Steadman, Chair
14 Year Old Severe Haemophilia A Boy With Inhibitors

I have a 14 year old son who has Severe Haemophilia A with inhibitors. I love being part of this community. The bravery of our children and parents never ceases to amaze me, whether it be facing an unexpected diagnosis, dealing with bleeds, undergoing surgery, learning to inject your child, letting them go off to school, standing back and letting them become independant, there is always a challenge to face. There are so many stages families go through to ensure a safe and happy life for their children that, I really wanted to try and bring those families together. I want to help create the opportunities to meet and have some fun, share some stories and experience and, show our mutual respect for one another in all the challenges we overcome.

Carreen McCay

Carreen McCay, Secretary
9 Year Old Severe Haemophilia A Boy With Inhibitors

My name is Carreen McCay I am Mum to Isabella and Henry.
Haemophilia was new to our family when Henry was diagnosed at 6 months old. When he was 2, he was diagnosed with an inhibitor. He has had a port a cath, a port infection, tried ITT, tried immune suppressants before enrolling on a trial; Hemilibra has changed our lives. We have learnt about Haemophilia on the ground running, but I have a thirst for knowledge and an understanding of his condition. Since the day of his diagnosis I wanted to meet other families that had been in our situation. I have actively sought out and given support and was very excited to become part of this group. I felt that our community lacked a grass roots support network which just let people meet and chat.

Jackie Redmond

Jackie Redmond, Treasurer
12 Year Old Severe Haemophilia A Boy

I'm a haemophilia carrier and my eldest son, Thomas, has severe haemophilia A. When Thomas was first diagnosed with the condition I knew very little about bleeding disorders, but thanks to a small support group organised by our haemophilia nurse I was able to meet up with other families where I received vital support and guidance. That small support group, consisted of just a few families, but it helped me find answers to so many questions, and gave Thomas a chance to meet other boys with haemophilia, making him realise that he was not alone. Local Families With Bleeding Disorders is a much larger version of the support group that we found so helpful, and as a qualified management accountant, I am pleased to be able to offer my skills as treasurer of this group.

Anna Harris Anna Harris, Committee Member
1 Year Old Severe Haemophilia B Boy

I'm Anna from Essex; my youngest son was diagnosed as having Haemophilia Severe B Type in 2017 and we were soon navigating an unknown world of bleeding disorders. The community of families walking the walk ahead of us was so supportive, I wanted to be a committee member to be part of this valued community, sharing experiences, supporting one another and providing our children and their super siblings with support too.

Natalie and Danny Jarman Natalie Jarman, Committee Members
9 Year Old Severe Haemophilia A Boy

I decided to join the committee for local families with bleeding disorders because our son Ollie has severe Haemophilia a, and I think that it would be wonderful to help bring families like our own together. So that we are able to not only share experiences with each other, but also learn from others too.

Michelle Bibby Michelle Bibby, Fund Raising Coordinator
7 Year Old Severe Haemophilia A Boy

I'm so happy to be a part of this amazing group.
When I started my fund raising, I really was not aware just how much it brings us closer together as a family. When preparing for an event we all get involved!
In the past, we never really spoke about Lenny having haemophilia because it used to drive me crazy people thinking it is contagious!! Since I've been doing events, Lenny is loving life. He feels like a celebrity (and wants to be one!!) he will chat about everything.... his struggles.... the positives.... how he deals with haemophilia.
Before now, I never really knew what he thought about his haemophilia as I was always on auto pilot (making sure I was his nurse and giving him his medication) so, to be able to give back to a fantastic support group and see everyone together, parents sharing stories and boys comparing bruises (and port scars) and, their stories about their scars (Lenny apparently had been attacked by a shark!), makes my realise we are all in the same boat. And to be around everyone dealing with our daily struggle, makes me feel a lot more relieved it's not just me going through it. Lenny can see all other boys with the same "special blood" also makes him feel "normal".
So, watch this space..... I have lots of plans!

Christina Burgess Christina Burgess, Committee Member
European Haemophilia Consortium Inhibitor Working Group Member
Director of Haemophilia and Bleeding Disorders Counselling Association (HBDCA)

Christina originally trained as a counsellor with British airways many years ago so the importance of psychological support has always been a passion for her. She became Head of Services at The Haemophilia Society in 2014, and, during the four years she was there, devised and developed many of the services of support that are there to the present day. During this time, she became completely committed to the bleeding disorder community, recognising what a special and unique community it is. Christina left the Society in October, 2017. She decided, having realised that there was a lack of effective, accessible, FREE psychological support available for people with a bleeding disorder and their families and carers, to set up HBDCA (Haemophilia and Bleeding Disorders Counselling Association).

Christina is a long-standing member of the Inhibitor Working Group for the European Haemophilia Consortium and is a member of the newly formed Psychosocial Working Group for the European Association for Haemophilia and Allied Disorders.

Christina was honoured to be asked to be a committee member of Local Families with Bleeding Disorders. She is in awe of all parents (knowing what a great job they all do in caring for, and advocating for, their children), as well as being full of admiration for the group and how brilliantly it has developed, grown its membership, fundraised and spread awareness in such a short space of time! Hopefully, Christina may be able to contribute in some small way to the wonderful work being done by you all.

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