Celebrating 100 Bone Marrow Transplants

Celebrating 100 Bone Marrow Transplants - Tuesday, November 24, 2009

Thalassaemia victim dies guiding others

Courtesy: Dawn.com

ISLAMABAD: ‘Should I rejoice that we’ll soon have a thalassaemia bill … or should I be sad that Salman isn’t among us to celebrate this news?’ wrote Ayesha Mehmood on her blog.

Ayesha is the sister of an unsung hero, late Salman Mehmood, who was running a website for the awareness of thalassemia patients.

After four days on ventilator, Salman succumbed to spinal meningitis at the Aga Khan University Hospital in Karachi on Monday.

Salman, also a thalassemia patient, was successfully running a website (www.thalassemia.com.pk) for the past few years from his home in Karachi.

The site was Salman’s contribution to spread the word about thalassemia – information otherwise not easily available.

‘We intended to create a general, massive awareness about the illness and to motivate people to support thalassemia patients’ Ayesha, also a thalassemic patient, told Dawn.

‘Salman was always on his toes to let the people know about the disease and was very social among internet users across the world and was managing the bread and butter for the family,’ 22-year-old Ayesha said.

She said: ‘The idea of developing an online medium was to facilitate people and families with thalassemia while all the information and support came from Salman.’

‘My father died few years ago while our elder brother also expired when he was 17 years old who was suffering from thalassemia, and now we are only two sisters and our mother’ she said.

The family is living in Garden West area in Karachi with no one to look after us.

‘Salman has done some awesome work and now I will continue his mission so we can save lives of many in future,’ she said.

Around 4,000 people from different countries have posted condolence messages and praised the efforts of Salman for creating an online awareness campaign with limited resources.

Ayesha asserted: ‘If we want to save our future generations, the government should make thalassemia tests mandatory for couples wishing to marry.’

Badar Khushnood, Pakistan’s Google representative, also a fan of late Salman, said: ‘He was a role model for the Pakistani youth and was a young entrepreneur. He has started earning from home through his website and without letting anybody know about his disease.’

‘I just learnt about him with his nick name – skdev – and also appreciated his work by commenting on his blog. Later, we met in a conference; Salman was a bright Pakistani as his work was truly commendable and he had helped.’

Meeting for Thalassemia Cause

Date: 27^th October 2009
Time: 8:00 PM
Place: Usman Memorial Hospital, Karachi.
Cause: Thalassemia Awareness Further Plans.
Plans: Arranging more blood and awareness camps, getting mandatory tests bill passed in National Assembly.
People attended: Dr. Mustafa (Medical Director, Usman Memorial Hospital), Abdul Hameed Kath, Shamsuddin A. Noorani (Consultant- Alternative Medicine, DXN Intl. Pakistan), Musaddiq Hussain Lakhani (International Distributor, DXN Intl. Pakistan), Mustafa, Mr. Abid Beli and Mrs. Abid, Arsalan Nara, Asif Yahya, Hina Yahya, Hammad & Ayesha Mehmood

Discussion in points:

• Explaining plan to Dr. Mustafa
• Mr. Noorani & Mr. Lakhani brief introduction on alternative medicine (Red Reishi Mushroom)
• Detailed discussion on Red Reishi Mushroom
• Discussion over Hussaini Blood Bank and Transfusion centre & other centers
• Dr. Mustafa’s idea of contacting Rafiq Khanani, who wants to do work in Thalassemia field
• Arranging blood and awareness camps in Expo exhibition, colleges, universities & locality
• Making arrangement for screening in discounted rate or free
• Approaching bloggers, arranging competition to write detailed and best post about Thalassemia on their blog and win prize in the end
• Gathering bloggers to write more and more about Thalassemia to make media pay attention to it
• Writing letters to each and every ministry and try hard to pass mandatory tests bill passed in National Assembly
• Making Thalassemia awareness brochure, CD

Drop your questions/advices/suggestions in Comment Box!

Salman Mehmood a.k.a SKDev (1985 – 2009)

Salman Mehmood the founder of Thalassemia.com.pk is no longer among us. He left this world at 2 pm PST on 19th October 2009 due to meningitis.

He was a thalassemic himself, 24 years old, working as a web developer for a US based company named ‘Directors Advantage’.

His dream was to save next generation from thalassemia, he wanted badly assembly to pass the thalassemia prevention bill and how unlucky of him that bill just got pass when he died…, he wanted to aware every single soul about thalassemia, he even mentioned his cause on a TV show, you can see the video on Youtube.

Rest about him I won’t write because other bloggers/journalist/writers have written on him a lot. As a brother he was a gem!

Am posting some of the articles/posts written on him, I will be including more whenever they are available to me:

In The Memory of Our Beloved Friend Salman Mehmood (@skdev)

Eternal Silence.. Dedicated to @skdev

Innal Lahi Wana Ilahi Raja’on

In the memory of Salman Mehmood

Salman (@skdev) will always live in our hearts

A Prayer for Salman – Inna Lillahi Wa Inna Ilaihi Rajeeoon

Those Who Met On The Way: Dedicated To Salman Mehmood #skdev

Gone too soon…

@skdev still alive in our hearts

Prayers needed

Pak thalassemia patient who blogged about disease, dead

The Laidback Show episode dedicated to Salman Mehmood

The Deduction

Salman Mehmood of ApniISP

Never too late … but …

Is there no hope?

My Friend, Salman

Thalassaemia victim dies guiding others

Bange-Dara [076] – The People’s Voice – Tribute to Salman

Blogger Salman Mehmood Died

If am missing any article that you know please mention, I want to gather all those articles/videos/posts all on one place.

May Allah grant him the highest rank of Jannah! ameen

-Ayesha (Salman’s Sister)

Pakistan requires regular blood provision for its 70,000 thalassemic kids

Courtesy: app.com.pk

KARACHI, Oct. 10 (APP)- Pakistan with an estimated population of more than 70,000 “Thalassemic” children, each requiring 22 bottles of blood annually, is exposed to constant shortage of blood, said Munaf Allana, the Project Director, Al Mustafa Thalassemia Unit. In a statement here on Saturday, he said 6,000 children are born every year in Pakistan with the serious blood disorder, Thalassemia, and all such child patients need to have no less than two blood transfusions each month.

Blood Drive

Who’s in Karachi & willing to donate blood this sunday for Thalassemia Patients registered at Fatimid Foundation?

There has been severe shortage at Fatimid, please donate blood & help save 3 lives.

If you can’t donate, have donated few days ago, then you can bring friends, relatives, workers anyone you want..

You can message me or Salman for more details or can call at: 0332-3080461

Event page at Facebook: Blood Drive

Make commitment ONLY if you are coming otherwise just don’t tick at ‘attending’ – I MEAN IT

Dr Syed Abdul Mujeeb (1957 – 2009)

Courtesy by: dawn.com

KARACHI, Sept 7: A senior microbiologist, in charge of the blood bank at the Jinnah Postgraduate Medical Centre, Dr Syed Abdul Mujeeb, who died of a heart attack on Saturday, was buried here on Monday. He was 52.

He leaves four brothers and three sisters. A number of doctors belonging to the JPMC and other healthcare facilities and educational institutions attended his funeral prayers.

He had received the President’s Pride of Performance Award for his outstanding services in medicine last year. He had written numerous research articles, published in international and national journals.

To his admirers, friends and colleagues, Dr Mujeeb was a thorough professional, committed to the wellbeing of patients suffering from blood diseases.

An expert in infectious diseases, Dr Rafiq Khanani expressed sorrow over Dr Mujeeb’s death and said he would always be remembered for his research and services in the field of transfusion medicine. He always stressed the importance of safe blood and blood products and their transfusion.

In June this year, Dr Mujeeb had participated in the Global Consultation on 100 per cent Voluntary Non-remunerated Donation of Blood and Blood Components, organised by the World Health Organisation in Melbourne, Australia.

In a presentation there, he had said that Pakistan with a population of 160 million had in general disorganised, fragmented and hospital-based blood transfusion services, with no national blood transfusion services and programme for voluntary blood donors. If two per cent eligible population donated blood twice a year, all current requirements of blood could be met in the country, he had said.

Mobilink arranges blood donation

Courtesy by: thenews.com.pk

KARACHI: Mobilink, a subsidiary of Orascom Telecom, organised blood donation drives at its offices nationwide for children suffering from Thalassemia and other blood diseases.

In total, more than 200 pints of blood were donated to Fatimid Foundation in Karachi and Lahore along with similar healthy blood donations to Sundas Foundation in Islamabad.

Organised under the auspices of Mobilink Foundation, employees were driven with the common goal of providing Thalassemics a chance to live with an improved quality of life. A pint of blood generally suffices three patients adding approximately two to six weeks in their lives. The contribution marks a commitment to societal and communal well-being.

Mobilink appreciated the work of Fatimid and Sundas Foundation for playing a very positive and supportive role in saving innocent lives and facilitating free of cost transfusion and treatment to needy children.

‘15,000 bottles of blood required daily for transfusion’

Courtesy by: thenews.com.pk

Friday, May 08, 2009
By Farooq Baloch

Karachi

About 15,000 bottles of blood are required monthly in Karachi alone to cater the blood requirement of Thalassaemia but existing blood banks cannot arrange for the supply of demanded quantum of blood, said Kashif Iqbal Thalassaemia Care Centre (KITCC), Chairman Muhammad Iqbal while talking to The News on Thursday.

Iqbal said that families of Thalassaemia Major patients are presently in agony due to shortage of blood transfusion facilities in the city. “This scenario has multiplied the hardships of Thalassaemia families. KITCC now intends to provide better transfusion services from its own blood bank to thalassaemic families,” he concluded.

“To keep these children alive they have to be given new blood every 15 to 20 days throughout their lives,” he said. “Unfortunately, due to the lack of awareness among people and lack of cooperation on part of the government and its health ministry, T-major patients die at an average of 15 years or so,” he lamented.

“We can’t do much about T-major patients but by spreading awareness and taking precautionary measures we can make sure that two T-minor patients don’t wed thus T-major cases would be reduced,” he continued.

KITCC is all set to launch it own blood bank to provide free of charge blood transfusions for needy Thalassaemia patients. All arrangements, including purchase of necessary machines and equipment, have been made to initiate the functioning of the blood bank while we have also applied for a license, said Iqbal.

Iqbal said that KITCC Blood Bank, which has been made exclusively for thalassaemic patients, is the only blood bank of its kind in Pakistan, as according to him there is no ward for such patients in whole country. Another bank exists in Islamabad but its services are substandard. “Any one can register their children with our blood bank for free treatment,” he said, adding: “20 to 25 children can be facilitated everyday in the blood bank.”

Thalassaemia is the most common genetically transmitted disorder of haemoglobin encompassing 8-10 million carrier population (Thalassaemia Minor) in the country. Presently 0.2 million are Thalassaemia major patients and 6-7 thousand babies are born every year with Thalassaemia Major.

“Simply the provision of treatment facilities is not the answer but prevention measures involving extensive awareness campaign are required to wipe out Thalassaemia,” Iqbal asserted.

Criticising the government, he said that Marvi Memon had once argued in the National Assembly that pre-marriage couple testing for Thalassemia should be made compulsory as is the tradition in other countries but Federal Health Minister Ijaz Jakharani opposed it.