Pakistan (GVO) – Ayesha Mehmood is the official spokesperson for Thalassemia Pakistan – an organisation that raises awareness about the inherited blood disorder.
Mehmood, who has thalassemia major herself and has lost two siblings to the disease, has made it her life’s mission to raise awareness on social media about the life-threatening disorder, to reduce social stigma associated with the disease and to push for legislation that will help curb its spread.
Thalassemia is passed down through families. The bodies of thalassemia patients make an abnormal form of hemoglobin, the protein molecule in red blood cells that carries oxygen. The disorder results in excessive destruction of red blood cells, which leads to anemia. If both parents have the mutated gene – the symptomless thalassemia minor – their children are highly likely to have life-threatening anemia.
Last week, a parliamentary panel in Pakistan unanimously passed a bill to make blood tests compulsory for relatives of thalassemia, with recommendations that blood tests be made mandatory before marriage to curtail the spread of the disease. While some might find the bill excessive, Mehmood, who goes by “Blessed Ayesha” on social media platforms, shared her feelings on Facebook saying drastic measures are necessary to curb the spread of thalassemia:
If our mature sensible citizens get them self tested then they don’t need government to force this onto them. Only if they understand..It hurts to see new born babies getting pricked twice/thrice to find a vein for blood transfusion. Sadly we are still living in dour-e-jahalat (era of ignorance.)
According to reports, 5,000 children are diagnosed with thalassemia-major every year in Pakistan. Thalassemia patients have to undergo regular blood transfusions, which makes them more vulnerable to HIV and hepatitis. And the sessions can be excruciatingly painful. Mehmood narrates her experiences along with tidbits of information that could help other patients:
80s generation suffered because there wasn’t any awareness at that time. But why new cases every year now even when there’s a lot of awareness is being given by media, thalassemia centers, etc.Trust me it hurts when a new born baby is pricked twice/thrice for blood transfusion, he/she wouldn’t have to go through this if their parents could have gone for a single prick of hemoglobin electrophoresis.An ounce of prevention is better than a pound of cure. On this day I would request you all to please get yourself tested for thalassemia and if you can donate blood then please do visit thalassemia centers in your city and give a gift of life to our thalassemia fellows! And to my thalassemia fellows take good care of yourself, we are no less than anyone, may we all live a long healthy and happy life ameen 🙂
There’s little to no awareness about the pain patients go through during, between and after transfusions. Mehmood routinely her blood transfusion experience:
The nurse couldn’t find a better place (for the needle)
Some of the most common symptoms of thalassemia include dizziness, headaches and leg cramps amongst other things
Woke up with headache and then legs pain.. #NotMyDayToday
— Ayesha Mehmood (@blessedAyesha) May 25, 2016
But that doesn’t stop Mehmood from reaching out to others in pain:
@shadesofsunrise I hope you are fine. Please let me know if need any help.
— Ayesha Mehmood (@blessedAyesha) May 23, 2016
That’s not all, to ensure thalassemia patients are able to get regular transfusions Mehmood runs and supports regular funding drives.
Please do visit and donate blood!
It's our humble request! https://t.co/JH1LiSMyEl
— Ayesha Mehmood (@blessedAyesha) May 28, 2016
It’s been a long battle for Mehmood and others fighting to curb the spread of thalassemia but they are not giving up just yet.
With the Islamic month of Ramadan around the corner, and TV audiences about to hit peak levels, she is making sure the disorder gets mainstream media coverage. Lately, she’s been busy tagging mainstream media anchors on Twitter encouraging them to cover thalessemia on their shows:
@iqrarulhassan is Ramadan aik program thalassemia awareness pe karlen please. Kisi center ka visit karke, kuch bachon ko show pe bula ke?
— Ayesha Mehmood (@blessedAyesha) May 29, 2016
“This Ramadan, please do a program on thalassemia awareness please. Visit a centre or call some kids on your show?”
This report prepared by Sana Saleem for Global Voices.