A minute protein causes a lot of trouble

A minute protein can cause a lot of trouble...not by its presence, but by its absence. People with hemophilia have to experience it every day. If you feel your life is tough...think about the boy who suffers from this incurable blood clotting disorder and lives in an underdeveloped nation without having any access to treatment. That is what a tough life is!!!

Plans for World Hemophilia Day?

The World Hemophilia Day will be here in a few days. What are your plans for it? Are you organizing an event or activity in your area? Or are you going to one?

Share your plans for the World Hemophilia Day with others on Blood Relations Blog's World Hemophilia Day FB Event.

Not being able to go to an event due to time, distance or any other issue. Well, you can always invite your facebook friends to the FB event and inspire them to learn more about hemophilia.

Are we normal?

Some of the strongest people I've met in my life suffer from Hemophilia or Von Willebrand's disease. They have always inspired me to look upon myself as a fighter, as a victor and most importantly as a proud man.

To all those who think God did something unfair to them by 'cursing' them with a bleeding disorder or by not making them a 'normal' person, think again. Your bleeding disorder might be what makes you different from others, better than all the 'normal' guys. Yes, its true you are not normal. But if you are not normal, what are you? Are you abnormal or special? Its your call. For me, hemophilia is what makes me different than others, its what makes me special. Am I special because I suffer from an incurable genetic blood disorder? No. I'm special because I know how I can live a vibrant life despite having hemophilia.

March is Global Hemophilia Awareness month. I request all my readers to learn more about hemophilia and other bleeding disorders and encourage your friends to do the same. One good place to start is the website of the World Federation of Hemophilia.

Youth Issues - Transitioning from a Teenager to an Adult with Hemophilia

I stumbled upon an old issue of Hemophilia World while looking around for stuff some days back. What made me stop and notice was my own picture on the cover. That picture brought back some good memories. It was the December 2010 issue and I could not resist opening and going through it again. This edition focused on many youth related issues, including the WFH President Mr. Mark Skinner stressing on youth awareness, education and engagement for persons with hemophilia.

However my favorite piece was a very informative article on youth issues written by Dr. Alison Street. She talked about the transition into adulthood, career choices and other challenges. It was a very interesting read. I recommend reading this article to any young person with hemophilia or another bleeding disorder. The WFH has put up this article on their website as well. Click here to read it on the website. You can also download the Hemophilia World December 2011 issue from the website.

WFH World Congress 2012

The WFH will be celebrating its 50th anniversary at this year's WFH World Congress in Paris. Taking place from July 8-12, 2012, the Congress will feature presentations, workshops, and exhibits on cutting-edge trends in research and treatment for hemophilia and other inherited bleeding disorders.

This event is the single most happening event for people with bleeding disorders. Patients, researchers, care providers, pharmaceutical companies; every stakeholder in the bleeding disorders community is present there. Having attended the last world congress in Buenos Aires, I know how much insight a patient can gain by attending this event.


Attending any conference in Paris will be a big expenditure for most people, unless you reside in Europe. For those who can afford it or have a sponsor who is willing to support you, I will recommend not to give this event a miss.


Visit http://www.wfhcongress2012.org for more details.

World Hemophilia Day 2012

17th April is a special date for people suffering from bleeding disorders. The world hemophilia day is observed on this date every year. This day is dedicated to people suffering from hemophilia and other bleeding disorders. This particular date was chosen as it was the birthday of Frank Schnabel, the leader of hemophiliacs who founded the WFH (World Federation of Hemophilia).

This annual event is a great opportunity to increase awareness about hemophilia and other inherited bleeding disorders. In order to assist people interested in organizing world hemophilia day activities and events, the WFH has released educational and promotional materials relating to this year's theme for the world hemophilia day - "Close the Gap". You can access these resources here.

Although there are still a couple of months for the world hemophilia day, preparing in advance is always advisable. Some suggested activities for the world hemophilia day are -

• Join the global World Hemophilia Day 2012 event on facebook to show your support. Invite your friends to this event as well.
• Place the World Hemophilia Day logo on your website and link to www.wfh.org/whd/en. Send a text message or e-mail to friends encouraging them to learn more about bleeding disorders by visiting the WFH website.
• Become a fan of the WFH facebook page and the Blood Relations Blog facebook page. Encourage your friends to visit and ‘like’ these pages. Wear red on World Hemophilia Day; send a memo around your workplace or school and ask your colleagues or classmates to join you, and then post the photos on these facebook pages.
• Copy the Facebook status and profile picture of the World Federation of Hemophilia (WFH) on April 17.
• Update your Facebook status with your plans for World Hemophilia Day and ask your friends to do the same.
• Support the work of the WFH by becoming a member. Visit www.wfh.org for more information.

Together we will "Close the Gap" in treatment and care for sufferers of bleeding disorders across the world.

‘Survive in the Jungle’ tour - Part IV - Heading Back Home

The week that we spent in the remote Himalayan village of Jaina was a tough yet adventurous period. Himalayas are like a stunningly hot girlfriend, they are beautiful from wherever you look, but to stay with them is a big challenge as they demand a lot from you. These pristine hills were as beautiful as ever, but our lives back in Delhi were calling us back desperately. It was time to end our brief summer love with these hills.

Paras posing in front of roadblocks.

Thanks to landslides and fallen trees blocking the roads, we had already ended up overstaying some days. We hired some woodcutters from a neighboring village to cut the fallen trees and clear the road. Once that was done, we heaved a huge sigh of relief. Finally, we started back for home. We were to do a pit stop at Ranikhet, before starting for New Delhi early next morning. This beautiful hill station is maintained by the Indian Army. We checked into the hotel and relished being back in a city.

‘Survive in the Jungle’ tour - Part III - Leeches and Joint Bleeds

We had been in the Himalayas for some days and were getting used to our new life. The Monsoon had done its share of damage. Most of the popular treks in the surrounding areas were out of reach due to landslides and fallen trees blocking the roads. Our desire to spend a night under open sky in a Himalayan jungle seemed a distant dream. We searched for some safe places in the nearby areas. There was a trail quite close to the village. It wouldn't have qualified as an adventurous trail in normal circumstances, but the rains had made it fairly challenging.

We climbed up with a great enthusiasm, something told us that it was the only trek we were doing on the tour. The trees were getting denser as we moved up ahead and there was an air of wild animals. I could have spent many days right there just roaming around and appreciating nature's beauty, if only the clouds stopped trickling.

Its always wise to look before you drink from a fresh water stream in the mountains during the rainy reason, unless you want something surprising to go inside you.

‘Survive in the Jungle’ tour - Part II - Murphy's Law

The morning was beautiful. We could feel the cool mountain breeze rush into our room as soon as the window opened. I burrowed myself deeper in my blanket. The other boys were nestled tightly in their beds.

Our place at the Jaina village

Rising up finally, we opened the door to see what awaited us right outside. Light drizzle. WHAT! DRIZZLE! What was the possibility of it getting worse?! “It’ll stop in a moment, let’s pack our stuff, we should move early if we have to do all treks we planned.” Pankaj felt comfortably at home while saying this. No surprises there…it was his home! Jaina was his village, and we were standing at the doorstep of his home waiting for the drizzle to stop. It didn’t!

‘Survive in the Jungle’ tour - Part I

How do you bond with other young men living with hemophilia?

That's me with Paras in Haldwani

The obvious answer would be to spend time with them. That was the basic idea behind the ‘Survive in the Jungle’ tour last August. I teamed up with my friends from our local youth group which I admin and we started planning to hit the Great Himalayas. We decided to tour Ranikhet and surrounding areas in the state of Uttarakhand. The mountains were a natural choice. They represent something that’s powerful and invincible. There is an inherent feeling of a challenge about touring them.

Day One

Hi everyone, I'm starting a blog about my experiences in the bleeding disorders community. Its been a long time since I've wanted to write about my life with hemophilia. Somehow I was just not doing it.

Hemophilia A is a bleeding disorder. About 1 in 10,000 people are born with it. Now that makes me a very unique creature. Its like being different from everyone else. Isn't that what a lot of people want to be. Well ask me!

Speaking out about one's life is a great way to ease your worries. It may not fix the issue but it can definitely help in feeling better, perhaps even stronger (if the feedback from listeners is encouraging). And I guess having a blog is the best way to shout out to the world without bursting your tonsils. So here it goes, this seems to be the best thing to do when I'm down with a bleed.

Read about the 'Survive in the Jungle' tour.