Blood Relations Blog

A minute protein causes a lot of trouble

2012-05-24T16:40:00.003+05:30

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?

2012-04-06T18:00:00.000+05:30

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?

2012-03-10T23:52:00.001+05:30

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

2012-02-23T16:35:00.000+05:30

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

2012-02-12T16:50:00.000+05:30

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

2012-02-05T23:46:00.000+05:30

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

2012-01-28T17:51:00.000+05:30

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.

Garjia Mata Temple is right in the
middle of the Kosi river.

The next morning, we were ready to go. We took a different route which was longer but safer. This route took us through some spectacular views, from the Ramganga and Kosi rivers, to the mystical Garjia Mata temple in the middle of the Jim Corbett national park. During our occasional stops, we saw a rooster measuring above two and a half feet, which is surely a fitting height for chickens belonging to the highest mountains of the world.

When we descended on to the plains, we found out that the continuous rain in the hills had done more damage than we thought. The water had flowed down, flooding the plains and damaging many roads. Our remaining journey was all about wading through water and maneuvering around broken roads. Several hours later, we arrived back to our familiar urban jungle. It was just like we had left it, yet it seemed so different now that we were coming back from another dimension.

There is something about a stunningly beautiful temptation, you start craving for more of it the moment it goes away and starts looking challenging again. Even if the charm had worn off while it was close to you, it doesn't take long for sparks to fly again.

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

Go to ‘Survive in the Jungle’ tour - Part I

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

2012-01-18T00:34:00.000+05:30

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.

We got attacked by a creature there, a rather unconventional one, a leech. There was an itch in my calf, I found the slimy creature sucking out my blood as I looked. I reached for it and removed it immediately, not knowing the right way to do it. It left a small bleeding wound which didn't clot for a long time for obvious reasons. Almost everybody else in our group had more than one leech sucking up their blood, including the local boys who were accompanying us. The creatures were all taken care of soon. By the way, just for the info, to remove a leech, Wikipedia recommends using a fingernail or other flat, blunt object to break the seal of the oral sucker at the anterior end of the leech, repeating with the posterior end, then flicking the leech away.

The sun was on its way down and the trickle had started evolving in a downpour, so we thought it best to retreat to our base at the village. We descended to the main road, took a breath, and started downwards again for the village. All this was taking a toll on my knees and I could feel tenderness in the right one. By the time we reached the village, I knew I needed an infusion. The biggest worry was that I did not have a sufficiently large stock of clotting factors with me. I reconstituted my dose and infused it right away, hoping wholeheartedly for my knee to get better. I went to sleep with a fresh joint bleed and a love bite given by a leech, but this was a great day for me on the tour.

Read ‘Survive in the Jungle’ tour - Part II

Continue to ‘Survive in the Jungle’ tour - Part IV

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

2012-01-12T21:00:00.001+05:30

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!

We were all packed up but we were not leaving as yet. We had to assess ourselves for any fresh joint bleeds and wait for the drizzle to stop. Everyone seemed fit, so after a long time waiting for the clouds to show mercy, we decided to start out anyway. We had parked our car by the main road which was at a distance from the village. The trail from the village to the road was steep and deserved men with good lungs. We were building our stamina and our hamstrings in the middle of the highest mountains of the world while the rain gods were making our path even more challenging by lubricating it!

Vaibhav and Pankaj

Once we were on the main road, we found that our car wasn’t in the mood to fire up. The indicators had been blinking all night somehow, draining out the battery completely. All that I was thinking about was the Murphy’s Law. Everything that could go wrong was going wrong. Just then a utility vehicle whizzed past us. We waved to it but the driver did not stop.

Hours later a minivan came up to help us. Thanks to some street smart engineering, we were able to use its battery to fire up our engine. Around the same time we received news that the road ahead had caved in and slid off the cliff. A utility vehicle was suspected to be missing. We had been stranded on the road for the whole day…there had been just one vehicle that had whizzed past us. Perhaps our car’s refusal to start wasn’t that unlucky.

Continue to ‘Survive in the Jungle’ tour - Part III

Read ‘Survive in the Jungle’ tour - Part I

‘Survive in the Jungle’ tour - Part I

2012-01-11T14:08:00.000+05:30

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.

Uttarakhand - The Land of Divine Spirits

August is right in the middle of the Monsoons (the rainy season), and thus not a very good time to try out something adventurous in the Himalayas. However, one of our group members, Pankaj, was a native of Ranikhet and we were convinced that we can manage things well as he had a strong local network. We started out with this optimistic feeling at noon on 13^th August and reached Haldwani the same night after a long drive. Signboards saying “Welcome to the Devbhoomi - Uttarakhand” greeted us. Uttarakhand is also known by the name Devbhoomi which would mean “Land of the Divine Spirits”. And the unquestionable beliefs of locals certainly make you think about the spirits living in these mountains.

The tourers

The next day, we took off for the Jaina village, a relatively unknown location that was untouched by tourism. I and my friend Paras had very little knowledge about life in the Himalayas. We were surprised by the challenges that locals face on a daily basis, people had to trek long distances just to get items of basic need which we get home delivered in cities. Pankaj told us that life has become very convenient in the past few years with roads being laid out in most areas. It is hard to imagine how things would have been before that. The feet still stay a very important means of transport. One can easily outrun a car while going up or down mountains as it will have to travel on roads winding around the hills while one can just trek up or down a vertical foot trail. For a person with a bleeding disorder, this can be the worst place to develop a bleed. Having our clotting factors with us was such a comforting thought. We sure needed them in the coming days.

The view from our accommodation in the Jaina village

Read ‘Survive in the Jungle’ tour - Part II

Day One

2012-01-08T18:00:00.000+05:30

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.