I never let haemophilia dictate how I live my life

03/01/2017
Patient stories

The day I received my diagnosis of moderate haemophilia A at 10 years old was the worst day of my life. I was shocked and scared. My parents asked the same question every newly diagnosed family asks: “Is my child going to die?” It was like being in a tunnel and you looked ahead and saw no end. I felt like my life was being taken away from me. It was devastating. I grew up playing baseball and now I was told I couldn’t play the sport I loved. At first it was hard to understand why. The hardest thing about haemophilia is knowing that there is no cure and for the rest of your life there are some things you can never do.

They say it takes a village to raise a child, and this is even truer when the child has haemophilia. After diagnosis I was referred to our haemophilia treatment centre (HTC) and to the Hemophilia Foundation of Greater Florida. Through education and networking events we met other families and gained a better understanding of the education materials and resources available. It sounds like a cliché but your haemophilia care team becomes like another family.

When I was a paediatric patient my parents did most of the talking and they made the decisions; but as I grew older I had to learn how to communicate with the healthcare team and tell them how my treatment was working, for example if I thought I needed to increase my prophylaxis. I would advise the family of a newly diagnosed child to immediately surround yourselves with as much support as you can take in. Knowledge is power. The more you know, the better equipped you are and the better your quality of life will be.

A great experience for me growing up was attending the weeklong summer camps for children with haemophilia at Camp Boggy Creek. I first went to camp when I was 11 and that’s where I met a lot of my friends. In addition, one weekend a year there is a family retreat which is a great way for families to share experiences. It really helps to understand that you are not the only one. I went to camp every year until I was 16, and when I was 18 I volunteered for a few years to give something back and help young people see that having haemophilia is not the worst thing in the world.

My parents asked the same question every newly diagnosed family asks: Is my child going to die?

Until you learn how to infuse factor VIII concentrate yourself you are always tied to a family member, HTC or nurse. You are always counting on them to take care of you. At first I didn’t want to self-infuse because it’s scary to stick a needle in your arm. However, I was trained by a nurse and began to self-infuse at 16. Once you learn to self-infuse you break away from the ball and chain of depending on others and your quality of life goes up. At the first indication of breakthrough bleeding or injury, you are able to infuse quickly, and in an emergency you don’t have to wait. Self-infusion is a liberation.

When I was younger I was quite shy and kept myself to myself. Growing up and learning how to communicate and explain my haemophilia to adults means that today I am an open book. I use my life experiences to help other families. As Patient Educator for Octapharma, my role is not only to share my story but to listen to our community and guide them to resources that can help them. I am honoured to share my experience and the knowledge bank I have accumulated over the years – for example, teaching people how to educate employers, teachers and friends about haemophilia. We have helped a lot of people understand that there is a solution to every problem that comes up.

I attended the 2016 World Federation of Hemophilia (WFH) World Congress in Orlando, which was truly eye opening. I met many patients from around the world and, despite differences in terms of availability of treatment, we shared many commonalities, such as physiotherapy techniques to use when you have a bleed. It was fascinating to find out that many countries are struggling to get medicine to patients or are not giving treatment to patients because of costs or availability of product. We are very blessed in the US.

My life has been enhanced because I know I am fully covered with my prophylactic treatment with Octapharma's simoctocog alpha. I don’t have to worry if I can do an activity because I know my factor levels are okay, and if something does happen I have the tools to take care of it. With my previous factor product I was having very uncomfortable adverse reactions, including dizziness, headaches and flushing. I switched to another product but went on to have 6–10 breakthrough bleeds a year, which is not the standard when it comes to prophylactic treatment. I happened to go to a Haemophilia A Consumer Roundtable meeting in Dallas, Texas and was amazed by the clinical data presented. From that day on I knew I wanted to switch to Octapharma's plasma derived factor VIII. I did my research and started treatment initially on a free trial. I have been on the product since February 2016. I have not had any adverse reactions and zero breakthrough bleeds. I am ecstatic about my choice.

I stick to my infusion schedule very strictly, which comes from experience. Your teenage years are the most challenging time. You might not follow the prophylactic regimen properly because dealing with haemophilia is the last thing you want – you want to go to the movies or hang out with your friends. I am disciplined today because I know that my factor VIII product protects me. My daughter Amelia is one year old; since she was born I make sure I am taking care of myself because I want to be there throughout her life.

As Patient Educator for Octapharma, my role is not only to share my story but to listen to our community and guide them to resources that can help them.

My life is very busy because as well as my job as a sales representative, and my role as Patient Educator, I coach high school American football five days a week. When you do what you love it’s never work. I enjoy guiding young men and seeing them progress over the four years they are with me. Football teaches them valuable life lessons on how to stay calm and deal with difficult situations. It’s great to see these young men evolve into valuable members of society.

I love knowing that I am making a difference in everything I do. I never let haemophilia dictate how I live my life. If I want to do something I always find a way to do it. With education and the correct support system I believe there is nothing you cannot accomplish.

We had a child with type 3 VWD who died after a head trauma.

Dr Faisal Khanani, Consultant paediatric haematologist oncologist, Tawam Hospital, Abu Dhabi, United Arab Emirates (UAE)

Our centre provides comprehensive care to 225 bleeding disorder patients. We try to treat all patients who come to our hospital; however, we are unable to treat patients who do not have insurance. Haemophilia can lead to disability if not treated, so it is very difficult when we cannot support all the families who come to us.

As well as 100 patients with haemophilia, our centre treats six patients with the rarest form of Von Willebrand disease (VWD), type 3. This most severe form of VWD is characterised by a total or near-total absence of Von Willebrand factor (VWF) in the plasma and cellular compartments, leading to a profound deficiency of plasmatic factor VIII (FVIII). We use Octapharma’s human VWF/FVIII solution for the treatment of VWD and haemophilia A, and as second line treatment for inhibitors with immune tolerance induction (ITI). In this solution, ratios of VWF to FVIII are close to physiological values (1:1), facilitating ease of dosing and monitoring.

If bleeding is left untreated, this can be serious. We recently had the case of an undiagnosed type 3 VWD child who died after a head trauma. I hope that in future the introduction of genetic testing will lead to early diagnosis and treatment.

Working in haematology and oncology, it is very satisfying when you see a child cured or feel better and begin to enjoy life. It is wonderful to see the children do well at school. Some of our patients develop a fascination with medicine. One of my patients is in medical school and another is studying pharmacy.

I believe that life is a gift of God. We have to make the world more beautiful by living positively, not only for ourselves but for the community.

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