annual summit

annual summit

How does it feel to bury the love of your life?

The question kept ringing in my head during the rest of my flight to Davao as I sat beside a man who came home to bury the very person that he wished he could spend the rest of his life with.

I couldn’t hold back my tears as my new friend told me about their love story. How he and his wife of six years met and how they spent the best full year together before she was diagnosed of Lou Gehrig’s disease (of the famous ALS ice bucket challenge).  Few months after her diagnosis in California, her health quickly turned downhill, forcing him to take her home to the Philippines where her family could help take care of her.

Imelda, my friend’s wife, was one blessed lady. Her husband’s devotion even to her last breathe reminded me of how many women in our hemophilia and bleeding disorders community were not as lucky.

Fresh from the First Annual Summit of the Women’s Group of Hemophilia Federation India, I’ve heard horror stories of how bleeders like me suffer because of their disorders. One young lady was abandoned by her husband only a month after her marriage because he couldn’t take the thought of caring for a “sick” wife.

Another, a carrier, was abandoned by her husband shortly after their hemophilic son was born.

Yet another, suffered of untold psychological pain for years under a husband who could not care any less whether she bleeds to death.  He refuses to take her to the hospital and would at times blame her for their financial woes from the costly treatments.

Bleeding disorders like hemophilia or von Willebrand Disease like mine and other inherited clotting deficiencies are life-long conditions that will never get healed no matter how many treatments one has undergone.

Difficult is an understatement when you go through severe and prolonged bleeds. The condition itself is already torturous especially for women still undergoing monthly periods. Adding to the discomfort is having a partner who does not understand and leaves the poor wife suffer in silence.

Thanks to modern technology. With the onset of Facebook and other social networking sites, there are now online support groups where women can share among themselves what they go through.

Yet, even in closed groups, very seldom are there discussions on the mental and psychological torment suffered by women (or even men sufferers for that matter) when their spouses are just so unattached.

The Annual Meeting held recently in Bangalore, which (I had the privilege to attend) gathered women all over India and five other countries, was a breakthrough and I wish it will be replicated all over the world.

Talking with other women who are on the same league and who truly understand what everyone is going through changes your perspective.  You no longer suffer in silence. I will forever be grateful to Hemophilia Federation India and My Girls Blood for organizing such a momentous event.

There were also happy stories, of course. Of supportive partners who sincerely cared for their spouses. They were sources of inspiration.

I wish for my blood sisters to be inspired, as I have, to face the challenges of having this disorder and rise to greater heights. We may not have a knight in shining armor like Imelda, my new friend’s wife. We may even end up not having the love of our life to the very end.  But together, we shall find courage in each other. ##

The Annual Meeting of the Women’s Group of Hemophilia Federation India was generously supported by Novo Nordisk Hemophilia Foundation.

Courageous women of Hemophilia Federation India with My Girls Blood founder Cheryl D’ Ambrosio.

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Blood sisters and a few brothers at the Women’s Group of Hemophilia Federation India’s First Annual Summit.

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Our lovely and loving “Mom” Cheryl D’ Ambrosio.

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Blood brother, Mukesh Garodia, execom member of Hemophilia Federation India and the man behind the Women’s Group.

 

 

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About Andrea Echavez

I am an advocate for people with bleeding disorders. My daughter Star and I were diagnosed with von Willebrand's Disease Type 2M.