World Hemophilia Day

World Hemophilia Day, Lahore

While today is not officially WHD, the Hemophilia Patients Welfare Society (HPWS) Lahore kindly celebrated it today so we could attend. Lahore is the lush capital city of the Punjab province, and with a population of 10 million, the second largest city in Pakistan. It was a wonderful celebration. Attending were patrons, all the doctors who assist patients with bleeding disorders, the HPWS board, and the Punjab Health Minister Muhammad Iqbal, who pledged to give greater assistance to those suffering with bleeding disorders.

An amazing array of about 150 patients attended: a young woman with VWD who had ovarian cysts and almost died but did not, due to one of Project SHARE’s donations; a young boy with hemophilia in great shape thanks to Ms. Faiza, the HPWS’s wonderful physical therapist; a baby who had a head bleed and sadly developed hydrocephalus and retardation–he was tenderly cradled by his devoted mother; a factor I deficient family whom we have pledged to help. I am happy to say the success stories by far outnumber the tragedies thanks to the dedicated care of the HPWS team. I was especially impressed by how the HPWS is grooming young men and women with hemophilia and VWD to assume leadership of their organization. Not an easy thing to do when there is limited factor and resources.

After the celebration and speeches came lunch, a Q&A, much hugging, smiling, sharing, curiosity. The patients, all Muslims and mostly poor, seemed genuinely touched that we had traveled all the way from the United States.

After the event, Dr. Shahla, who has spearheaded the founding and development of HPWS Lahore, and who herself has VWD, organized a fantastic trip to the Pakistan/India border to witness the “Flag Ceremony,” a ceremonial military show on both sides of the border of India and Pakistan, which are separated by only five feet called “No Man’s Land.” The spectacle was complete with goosestepping Punjabi militia, bugle blowing, shouted commands, flag waving, and tremendously cheering spectators on both sides, who cried “Long Live Hindustan” in reply to “Jiva Jiva Pakistan!” It was thrilling to see the iron gates of both countries open for one hour and for both sides to mirror their moves alternately in a mock display of military might for the crowds.

We thank the HPWS Lahore for inviting us today and allowing us to learn, teach, share and celebrate!

(Photos: World Hemophilia Day, Lahore, Laurie with girl with VWD who was operated on with SHARE donated factor, “Jiva jiva Pakistan!” at the India/Pakistan border.) See more photos from the trip here. 

World Hemophilia Day in Pakistan

Today is April 17, the birth date of Frank Schnabel, a Californian with hemophilia who founded the World Federation of Hemophilia 44 years ago. I am privileged to be able to spend this important day with our friends in Pakistan!

Julia Long, director of Project SHARE and I are having an exciting and fascinating trip. We arrived on Saturday in Karachi after a 20 hours in transit and within a few hours Julia was having a camel ride by the Arabian sea! On Sunday evening we flew to Islamabad, the capital, in preparation for today. On Monday we toured the government hospital, PIMS, which offers free care to all with hemophilia. I visited this center in April 16, 1999, on my first trip to Islamabad, and on that very day eight years ago helped to open the Rawalpindi chapter in a general meeting with patients, parents and treaters. (Rawalpindi is a town next to Islamabad, and the location of PIMS) It was an incredible feeling to be back, and to see how our initial efforts have blossomed. They not only have a comprehensive treatment center, but a strong, vibrant chapter that could be a role model for other developing countries. Congratulations on this day to this amazing chapter, and to amazing Pakistan!

Today I gave a talk which emphasized what I think Frank Schnabel would have emphasized–unity. Unity among hemophilia communities, unity among chapters, between doctors and patients, between government and the hemophilia society, and between countries with hemophilia. We celebrated with great joy a major success– the government of Pakistan recently has made its first ever purchase of factor for patients! We also noted Project SHARE’s recent 1.6 million unit donation to Pakistan, valued at $1 million. And we announced the opening of Save One Life in Rawalpindi, which will provide needed sponsorships from Americans directly to impoverished Pakistani children with bleeding disorders. We already started Save One Life in Lahore (where I am currently writing this from), and we’re pleased to now include Rawalpindi and Islamabad.

(View photos from the trip here)

Later we had a Q&A in which the patients asked great questions. Julia and I were able to meet with many patients and parents; we handed out toys to the children (colorful, inflatable globes to emphasize World Hemophilia Day, compliments of Mark Zatyrka of AHF, Inc.), which the children loved! We had lunch with all 100 patients, took a group photo and with some tears and many smiles, then left to visit the stunning Faisal Mosque. Eventually off to the airport!

Pakistan is an amazing country: descendant from an ancient civilization, with the sixth largest population on earth, and almost completely Muslim. It has expert and compassionate doctors who are dedicated to helping hemophilia patients, and patients who are grateful for all aid. The Pakistanis are grateful to all the Americans who donated factor to SHARE and who have expressed compassion to their suffering and need. Above all, Pakistanis are incredibly gracious people, who treat everyone like honored guests. I have traveled the world, truly, and have rarely met such an amazing and genuine display of civility, manners and hospitality. I guess that is why I keep coming back! This is my fourth visit, and hopefully, just the beginning. We have a lot of work to do, and I would be honored to continue to work with Pakistan. I hope you might join me in supporting their children, who are in need of sponsors.

Please see if you want to learn more! We will soon have about 10 more children in need of sponsorships.

Please tune in tomorrow for more news on our trip!

(Photos: A Great Welcome from the Rawalpindi Chapter, Julia and Dr. Samina with the donation of factor from Project SHARE, Islamabad Street Scene, group photo of patients, doctors, Laurie and Julia on WHD in Rawalpindi, Umer, a beneficiary of Save One Life, and his family)

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