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Staff at Imperial College Healthcare NHS Trust help create a disease awareness book for children 30 Oct 2015

A Doctor and Nurse working at Imperial College Healthcare NHS Trust have helped design a comic book for children, which aims to explain a serious adult disease to young people in an approachable, understandable way, without trivialising the key issues in having a family member with the condition.

Consultant Cardiologist, Dr Simon Gibbs and Clinical Nurse Specialist, Wendy Gin-Sing worked with the Medikidz team to develop the comic book, called Medikidz Explain Pulmonary Arterial Hypertension (PAH), after seeing lots of patients struggle to explain to their young children what was wrong with them.

PAH is a serious life threatening disease caused by the narrowing or tightening of the pulmonary arteries, which connect the right side of the heart to the lungs. As PAH develops, blood flow through the pulmonary arteries is restricted and the right side of the heart becomes enlarged due to the increased strain of pumping blood through the lungs. This leads to the common symptoms of PAH including breathlessness and fatigue. The continued strain on the heart and lungs leads to them working ineffectively and ultimately people affected with PAH may need a heart and lung transplant.3,4

Jocelyn Barker who was diagnosed with PAH in 1996 and whose own personal experiences inspired the storyline of the comic book said:

“My son Caleb and I came up with the scenario for the book and it is based on his experiences of being a child whose parent has been diagnosed with PAH.

“Caleb said that he became worried about me if we were out shopping and I became very breathless after climbing stairs or slopes. He said people would stare and he would be concerned that I was becoming poorly or even dying. The book touches on this type of scenario and I think that many children whose parents suffer with PAH will relate to this. That’s why I think the Medikidz book is such a great idea. It explains to children in a clear, simple and factual way what PAH is and the hospital process. I think it’s so good that adults should read it too.”

The comic book is available from Hammersmith Hospital via the Pulmonary Hypertension Specialist Team at Imperial College Healthcare NHS Trust, and the Pulmonary Hypertension Association UK (PHA UK). The production of the comic book was sponsored by Actelion Pharmaceutical UK Ltd., who have had no involvement in the content.

The comic book will be formally launched at the Pulmonary Hypertension Association UK (PHA UK) 15th anniversary celebration weekend, ‘PHAntastic’ on the 30th October to 1st November 2015.

Notes to editors:

Patient case study, Jocelyn Barker, 53 and mother of two said: 

“Just after the birth of my daughter Hope in January 1995, who was my second child, I began to feel severely exhausted. Initially I just put the tiredness down to having two children under two.

“Later that year we went on a family holiday to Whitby. Anybody who knows Whitby will know that it is full of steep hills. I noticed during that holiday that I was finding it increasingly difficult to reach the top of hills without becoming very out of breath. Not only were the hills very difficult but any kind of physical activity even lifting the children out of their cots felt like a huge physical task. It was on that holiday that I first thought something was seriously wrong.

“In October 1995 I went to see my doctor and was initially diagnosed with asthma, but the inhaler didn't help and after a chest infection the following January I was sent for a series of tests including an echocardiogram.

"On the day of the tests I was just about to leave the hospital when they called me back in and said that they could see something was seriously wrong. It was at this appointment that they first said it could be PAH. They told me not to lift anything heavy or be on my own with the children. As you can imagine with two young children that was particularly difficult.

“As the internet wasn’t really in everyday existence at this point I took to medical textbooks to try and find out more about PAH and it was here that I first read that the average PAH prognosis (at the time) was two years. However I turned out to be one of the lucky ones and found that many of the treatments offered to me, such as sildenafil (Viagra®)* helped slow the progression of PAH.

“After a few years of swapping treatments every 18 months it became clear that I needed a heart and lung transplant. I was on the transplant waiting list for three and a half years before we realised that finding a suitable heart and lung transplant in time would not be possible. Instead doctors were able to offer me a new pair of lungs. I had my lung transplant in May 2008 and it has changed my life. Since the transplant I have been able to do things I thought would never be possible again, from just walking around the park to backpacking in South America with my daughter. Although there are still some health issues post-transplant I have a much better quality of life.

“My son Caleb, now 22, and I came up with the scenario for the book and it is based on his experiences of being a child whose parent has been diagnosed with PAH.

“When we sat down to think of a scenario Caleb said that as a child he became worried about me if we were out shopping and I became very breathless when climbing stairs or slopes. He said people would stare and he would be very concerned that I was becoming very poorly or even dying.

“My husband and I made the decision as parents to tell our children the truth and we always tried to explain to them, in an age appropriate way, what was wrong with me. However, now with the prevalence of the internet, children can often source incorrect or out of date information about diseases which can often lead to them feeling unnecessarily concerned or upset. That’s why I think the Medikidz comic book is such a great idea. It explains to children in a clear, simple and factual way what PAH is and the hospital process. I think it’s so good that even adults should read it too.”

*unlicensed

ABOUT PULMONARY ARTERIAL HYPERTENSION3,4

Pulmonary arterial hypertension (PAH) is a chronic, life-threatening disorder characterised by abnormally high blood pressure in the arteries between the heart and lungs of an affected individual.

ABOUT MEDIKIDZ

Medikidz works closely with healthcare professionals, families, children and patients to produce unique learning materials in an interactive, highly visual format, aiming to educate children about their own health, and the health of those around them. Over 3.5 million Medikidz comic books have been distributed globally, involving over 400 leading specialist physician peer reviewers and 100 endorsing partners worldwide. The Medikidz mission is to create a global community of young people that are informed, empowered and health-aware.

As well as the 60 current comic book titles available on paediatric conditions (such as Epilepsy, Scoliosis, Leukaemia and Diabetes), Medikidz has also produced titles relating to adult conditions so that a parent or loved one faced with a diagnosis has a tool to help them explain what is happening to the young people in their lives. Comic books in this series published to date include:

• What’s Up With Mum? Medikidz Explain Pulmonary Arterial Hypertension
• What's Up With Mum? Medikidz Explain Breast Cancer
• What's Up With Dad? Medikidz Explain Advanced Melanoma
• What's Up With Grandpa? Medikidz Explain Parkinson's Disease

Medikidz also produces pamphlets and brochures explaining paediatric-licensed medicines, as well as ones on hospital investigations, such as Medikidz Explain MRI Scan and Medikidz Explain Endoscopy.

Medikidz has been awarded the Gold Mom's Choice Award, London Business Innovation of the Year Award and has been shortlisted for IPG Newcomer of the Year, and named in the Start-ups 100 list. Medikidz has also been accredited with the

ABOUT ACTELION PHARMACEUTICALS UK LIMITED

Actelion is a leading biopharmaceutical company focused on the discovery, development and marketing of innovative drugs for diseases with significant unmet medical needs.

Actelion is a leader in the field of pulmonary arterial hypertension (PAH). Our portfolio of PAH treatments covers the entire spectrum of care with oral, inhaled and intravenous medications. Actelion is also offering treatments for a number of specialist diseases including Type 1 Gaucher disease, Niemann-Pick type C disease, Digital Ulcers in patients suffering from systemic sclerosis, and mycosis fungoides in patients with cutaneous T-cell lymphoma.

Founded in late 1997, with now over 2,400 dedicated professionals covering all key markets around the world including Europe, the US, Japan, China, Russia and Mexico. Actelion has its corporate headquarters in Allschwil / Basel, Switzerland.

References

• Badesch DB, Raskob GE, Elliott CG, et al. Pulmonary arterial hypertension: baseline characteristics from the REVEAL Registry. Chest 2010;137:376–87.
• Ling et al. Changing demographics, epidemiology, and survival of incident pulmonary arterial hypertension: results from the pulmonary hypertension registry of the United Kingdom and Ireland. Am J Resp Crit Care Med 2012; 186: 790-796
• National Pulmonary Hypertension Centres of UK and Ireland. Consensus statement on the management of pulmonary hypertension in clinical practice in the UK and Ireland. Thorax 2008;63(SII);ii1-ii41.
• Galiè N, Hoeper M, Humbert M, et al. Guidelines for the diagnosis and treatment of pulmonary hypertension. Eur Heart J 2009; 30:2493-537.

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