This is the sad and unfortunate condition of hundreds of children suffering in Egypt from a condition called ‘Immune Thrombocytopenic Purpura’ (ITP).
The life-altering disorder is highlighted each year in September and was commemorated in Egypt this year from 20 to 24 September.
In late September, Shifaa, a support group for people with ITP — in cooperation with the pharmaceutical company Novartis — launched a campaign titled ‘Stop Counting, Keep Living’ that raises awareness on the disease and its effects on those who suffer from it.
ITP is an autoimmune disorder of the blood, most often found in young children from one to six years of age.
The disorder causes the body’s immune system to destroy blood platelets, lowering their total number and preventing blood from clotting normally.
When the condition is not properly diagnosed and treated, it can lead to serious complications like internal bleeding, which can be fatal.
In 2010, ITP Awareness Week was launched to serve as a platform for awareness and education, providing facts and debunking myths about this condition.
Despite being more common than haemophilia, ITP remains a little-known disease to most, but for those suffering from it, the impact can be devastating.
The campaign narrates stories of ITP patients across the country in creative and engaging ways, delivering one simple message: Although people who have the illness must constantly keep track of their blood platelet levels, it shouldn’t rule or define their lives.
Many of the events associated with the campaign were characterised by the colour purple.
Purple has long been associated with ITP because it is the colour of bruising. The colour has played an instrumental role in raising awareness for the disease.
The campaign held several activities, including a blood donation drive in partnership with Ahly Sporting Club, an extensive social media campaign that saw influencers and celebrities endorse the campaign and raise the profile of the disease, a stunning photoshoot with the ballerinas of Cairo at several of Egypt’s iconic landmarks, and a purple night-time illumination of Cairo University’s Al-Qasr Al-Aini Hospital.
The awareness campaign also included a specially commissioned upbeat song appealing to youngsters and grown-ups alike and a rowing parade which featured 12 boats sailing around Manial Island, with spectators able to watch and cheer from the overlooking bridges.
Dr. Mervat Mattar, the founder and president of Shefaa, said that “although it is rare, it’s an illness that does affect people in Egypt, and for those suffering from the disease, it can be a lifelong affliction.”
“But what we want people to know is that with the right lifestyle, diet, exercise, and healthcare management, patients don’t have to feel isolated or live in fear. We want people to know that with the right treatment, ITP is a very manageable disease.”
Adding to Mattar’s comments, Dr. Hossam Salah — the president of the hospitals of Cairo University — said “at Cairo University, blood disorders are an area of particular focus for us, and we are keen to raise the profile of ITP and educate people about it so that they can understand the disease and seek the right treatment should they or a loved one be diagnosed with it.”
“Over the last period we were able to reach 1,300 Egyptians with blood disorders, including patients suffering from ITP.”