CHARLIE

Charlie and his mother, Carrie, recently came to the studio to take part in the Rare Aware project. Carrie explained how the rare disease ITP affects him.

“Charlie is a very happy, active 5-year old boy, who wears his heart on his sleeve and is full of love and compassion for everyone close to him. He can also be very boisterous like any other 5-year old boy, he likes to let people know he’s there and is good at leading the way - only after 10 minutes of being painfully shy when you first meet him though! He loves all things Marvel, anything to do with superheroes and fighting bad guys. He’s adamant he will be a police officer when he’s older. Charlie spends a lot of his time playing music, singing and dancing. He loves to put on a show for us showing us his latest moves and made up songs.

He has a condition called ITP (Immune Thrombocytopenia). It’s a blood disorder that affects the platelets so basically the immune system is malfunctioning and thinks that the platelets are a virus so it attacks them. It affects Charlie’s everyday life in many ways, even simple tasks like getting dressed can leave him bruised or with a petechiae rash on his body. He can’t take part in any activities that involve physical contact, football, martial arts etc are not an option, he is not even able to go to soft play in case he bangs into somebody else.”

“I have to turn down a lot of party invites, as most of them at this age are at soft play centres. Taking him to the park can be upsetting for him too because if it is busy I have to restrict what he can play on. As part of his condition he also suffers from chronic fatigue which leaves him exhausted. We have many appointments which mean we spend a lot of time travelling backwards and forwards to hospital. As the risk for Charlie is high if he gets knocked, he has open access to the children’s ward. In addition to getting bumps and bruises, it can be difficult to stem bleeding if he gets a cut. He’s at a higher risk of brain haemorrhage too so any time he gets a knock to the head we need to take him to hospital.

I don’t want Charlie to live in a bubble wrap world, so I do try to let him live as normal a life as possible. We try to be creative and think of ways he can take part in things without getting hurt. Although he knows he has ITP, he doesn’t always understand and gets upset. Considering how much he has had to cope with over the last few years he does incredibly well.”

“His condition doesn’t just affect him as he has a younger brother too who is equally as boisterous. I want him to do as much as he can so, yes, fight if you want, but just do it with pillows rather than smacking each other with whatever else”.

“We have worked closely with school to explain the risks whilst trying not to alarm the staff or his friends. It is a difficult balance though and I am often required to go to school if he has had a knock and they are not sure if it is serious or not. It does mean I am very restricted in what I can do during school hours.

Because of his ITP he gets treated differently by people. When people see his bruises, which can sometimes be quite obvious, they stare or point and whisper. “Oh god, what happened to your face” is a popular one. We don’t mind people asking, as then we can inform people of his condition, but I think there’s nicer ways to ask, particularly considering he is a five year old boy.

Despite explaining about his condition, it can still be difficult for people to appreciate that there is no simple treatment and that he has to be cautious. People either assume we are being too protective or alternatively people are scared to even breathe around him in case he gets hurt. It means he is often not included in things”.

“It’s important to us to raise awareness because knowledge is power. The more people that know about ITP and rare diseases in general, the better. People need to be aware that these conditions exist, and to not judge people by the way they look or how they live their lives. You just don’t know what that person is dealing with.

Invisible illnesses can be very difficult. When Charlie doesn’t have any visible bruises, people don’t understand how he can be so ill and need to be cautious. Awareness will help the people dealing with them find more information, meeting fellow sufferers and possibly even lead to a cure.”

FIND OUT MORE

IMMUNE THROMBOCYTOPENIC PURPURA (ITP)

Immune thrombocytopenic purpura is a medical term for a condition in which there is bruising (purpura) because there are fewer platelets in the blood than usual (thrombocytopenic) and is usually caused by something going wrong with the immune system (the body’s defence against infection) or an allergic reaction of some kind.Chronic ITP is the term for ITP that has not gone away on its own after 6 months. Only 1 in 4 children with ITP will develop chronic ITP. The majority of children with "chronic" ITP will still have some recovery of the platelet count at a later date and the majority of younger children will still completely recover after a few years even if the ITP is still present at 6 months.About four in every 100,000 children develop ITP each year.

For more information about ITP, click here.

Source: https://www.itpsupport.org.uk/index.php/en/information

ITP Support Association

The ITP Support Association is a UK registered charity which aims to promote and improve the general welfare of patients, and the families of patients, with Immune Thrombocytopenia (Idiopathic Thrombocytopenic Purpura). They provide support in all sort of ways including patient/parental/antenatal information and support, guidelines for schools and advice on referrals for difficult or refractory cases, as well as much more. To find out how they can support you or your family, click here.

Source: https://www.itpsupport.org.uk/index.php/en/about-the-association

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