Thursday, March 7, 2013

International Women’s Day and Us Women With Bleeding Disorders

March 8 is International Women’s Day.  Originally called International Working Women’s Day, it started as  a political event in recognition of the struggles of women worldwide for equal rights including the right to suffrage.  Today, in most parts of the world, women have become empowered and to some extent, even more than men. 

But in the hemophilia community, women with bleeding disorders continue to struggle for recognition.   Many doctors and medical practitioners mistakenly hold on to the belief that only males can be affected by hemophilia.   This is because hemophilia is generally perceived as a sex-linked disorder.  Since males only have one X chromosome while females have two, the defective gene is guaranteed to manifest in any male who carries it.  And because females have two X chromosomes, the probability of having two defective genes is very remote (plus the fact that hemophilia is rare).

Most women carriers are asymptomatic or do not exhibit any symptoms of the bleeding disorder.  If the offspring is a male, chances are he will show symptoms.  But there are actually more types of hemophilia that are autosomal or non-sex related.  There are 10 types of clotting factors in our blood. Clotting factors are proteins that makes the bleed stop naturally.  In people with hemophilia, their blood takes longer to clot because they either lack clotting factor  or their clotting factors are defective.

Imagine when women have hemophilia.  Monthly periods can turn into monthly nightmares.  Last year, Star’s menses went on practically non-stop for nine months.   She had to be confined five times, not counting the outpatient treatments in between.  And yet, I’ve heard of other women who bleed for two years non-stop.  Even the Bible recorded a woman who bled for 12 years!

According to Dr. Michael Tarantino, a doctor of a Red Cross clinic in California, understanding of bleeding disorders in women has not progressed far enough.

“Women and girls with bleeding disorders often get written off because they’re not boys,”  Tarantino was quoted in an article on PJStar.Com.  “So it takes longer to get a diagnosis in girls. They’re usually adults by the time they’re diagnosed.”

Even the terminology “hemophilia” to refer to bleeding disorders in general is subject to debates in the hemophilia community.  Some say hemophilia only refers to deficiencies in coagulant Factor VIII (Hemophilia A), Factor IX (Hemophilia B) and Factor XI deficient (Hemophilia C).  Others insist that other coagulant factor deficiencies (Factors I, II, III, IV, V, VII and vWD) should also be called hemophilia.

It may take a while for the terminology issue to be put to rest.  But what is clear is that — yes, women can also have bleeding disorders.##

Wednesday, August 1, 2012

Memories from Paris

After all the troubles I finally got my visa a day before my flight to Paris was due. For two months I had only been dreaming about attending the World Federation of Hemophilia congress, 2012. Fortunately, I was given an opportunity to do a poster presentation at the congress. My mum also accompanied me for the congress and I was happy that both of us would experience a nice time in Paris.

I didn’t know what things to keep in my luggage due to the excitement of going to Paris for the World congress. Guess what? I forgot to carry my woolens. The moment I landed in Paris, I was shivering due to cold waves. Being an Indian, Paris seemed to be colder for me. Somehow I managed. 

Mum at the airport, France
After checking out from the airport I had to find my way to my hotel. It wasn’t difficult as French nationals really helped me at every step. There was a pretty woman was watching me as I was in confused state. She came to me and told me how to get tickets for the metro train. I thanked her and got my tickets. 

Then I asked for metro platform directions from a dad of two beautiful kids. He was so helpful and kind to me. We boarded the same train and chitchat for a minute or two. My mum asked me to take permission from the kids’ dad as she wanted to get herself photographed with those cute and innocent kids. I really liked those kids as they were disciplined and shy. 

Mum with cute kids on our way to Chattele

Finally we got down at Chattele. From there we had to take another train in order to reach our hotel. At the Chattele station we met an old French man who made sure that we boarded the appropriate train. He sat behind us in the train and informed us to get down at La Defense. I thanked him and moved on to find the way to our hotel.

As we walked towards the exit of the La Defense metro station I asked a young man to guide us towards hotel IBIS. He not only gave us the directions but also lifted our luggage and dropped it at the exit door. I think he was going for work but I was so impressed when he stopped and helped us generously. 

Finally we checked in our hotel. I and my mum got fresh and ate Matthi and Gur pare which we got with us from our country. Then we went to hotel Novotel to find out whether Cheryl D’Ambrosio had checked in there or not. The receptionist was so kind that he showed the list of World congress delegates which were suppose to check in at Novotel. Unfortunately I didn’t find Cheryl’s name in that list. With a sad face I came back to my hotel. My mum got busy with arranging our luggage in the room while I fell asleep. After arranging the luggage my mum also slept as she was also exhausted and tired. We had a wonderful sleep. Suddenly we heard door knocking. The moment I opened the door there was no one. I thought someone would have knocked our door by mistake. Surprisingly I got a call from Cheryl and she told me that she was knocking our door but we didn’t open it. At that moment I got to know that Cheryl was staying in our hotel and I was not even aware of it. I got to know about Cheryl in 2009 when she was thinking of hosting an International creative arts contest for girls and women with bleeding disorders. One of my writings was referred to Cheryl by Laurie Kelley. I was fortunate to be the first contestant of the creative arts contest. After that Cheryl established MyGirlsBlood and I got associated with it. I am glad to be part of MyGirlsBlood as it was Cheryl was motivated me to present my work at the World congress.

Reception area of Hotel IBIS

It was a magical moment when I saw Cheryl. She hugged me and we felt extremely emotional. We had been sending emails, exchanging ideas and planning activities for MyGirlsBlood together for a long time but never met each other in person. I am at loss of words to describe that moment. Then Cheryl met my mum and both of them hugged each other. I made sure that Cheryl felt comfortable and talked for an hour or so. It was Cheryl who invited me and my mum for dinner and took us to see Eiffel tower and other famous monuments with her. We took photos and discussed how women with bleeding disorders can get benefited and empowered. Three of us came back to our hotel and decided to meet at 11:30 AM so that we could go together to attend the congress. 

Cheryl and Me waiting for dinner at our hotel

Visit to Eiffel tower with Cheryl

On the first day I met my old and close friends from the hemophilia community. I was fortunate to meet Shirin from Iran. She came with her husband and it was really nice to meet both of them.

Me and Shirin

Cheryl introduced me to Patrice and all of us hanged out together at the grocery store on level 0 of the congress venue. Patrice is a charming woman who has charisma in her smile. She is doing a great job for women with bleeding disorders in the United States.

Me, Cheryl and Patrice at the grocery shop, Level 0

I met this big dog at the WFH congress venue

At the opening ceremony I finally met my dearest friend Laurie. It was the second time to meet her in person. Laurie told me that she adored my Labrador puppy ‘Oriana’ so much. She met my mum and was really happy to see us there. It was such a great moment for me to be with the most important ladies of my life – my mum, Laurie and Cheryl. They have always been my strength during tough times. I owe my success, happiness and life to these women.

Laurie, Me and Cheryl at the opening ceremony of WFH congress

Me, Laurie, Mum, Wendy and her friend from Baxter

It was a moment of pride for MyGirlsBlood when Cheryl gave a presentation on Patients and family blogs. She stole my heart away. Her presentation was really impressive and made an impact on the audiences.  

Cheryl giving her presentation

After Cheryl’s presentation we went to a nearby restaurant with our new friend Wendy. I must tell you that Wendy is a real sweetheart and she calls me Miss. Anorexic. She is a great person and a kid at heart. It was nice to hang out with her.

Me, Wendy and Mum at EDF, La Defense

On July 12th, 2012 I had my poster presentation. Cheryl was with me to help me fix my poster on the board. She was happy to see me come so far and became emotional Cheryl took photos of my poster and me. I felt proud for making Cheryl’s dream come true. She had a vision for me and I was fortunate to make it a reality.

My poster presentation at the WFH congress

As days passed I learned a lot from the hemophilia leaders, researchers and experienced delegates at the congress. I did make new friends and exchanged ideas for making life better for women with bleeding disorders. I met a team of people from Japan and I was really impressed by their poster. I got an email from one of the team members and it is great to share ideas for making our hemophilia community stronger around the globe. 

                                                   The UK hemophilia leaders team

                                            The Team from Japan, Habataki foundation

Prof. Shinobu and Me during poster presentations

  Painting by a French painter at the opening ceremony of the World Congress, 2012

I will always cherish all these wonderful and special memories which Paris gifted me. All I want to say is ‘Merci France’. 

Tuesday, June 12, 2012

Planning for JT

by Niki Duffy,  Illinois USA -

Here we are with less than 10 weeks to go. In less than 1 month I will know exactly what JT's birthdate will be and then the countdown will begin. For the first time one of my children will be delivered via scheduled c-section in Peoria at OSF. I have known this all along, but I've kept it in the back of my mind, because it's scares me to think about how this is going to play out. On the day of delivery, we'll all drive over to Peoria and St. Francis. My Aunt and my Mom will be there to take care of the girls, as we plan to keep them in Peoria and close by so we can see them often. Then we'll proceed with the C-section to deliver this Duffy child who so loves to shove his feet in my ribs. Upon delivery, JT will be whisked off for a sonogram of his brain to ensure that he has not suffered a brain bleed in utero or during delivery.

What we can never know about Izzy was when her fatal brain bleed started. It could have been incurred as a result of passing through the birth canal during delivery, so the c-section is to eliminate that as a potential threat. Also upon delivery, umbilical cord blood will be collected and sent to the lab which will be on standby. We will be running a PT and PTT test which will check the length of time it takes for his blood to clot, it will also test his Factor X level. The clotting time tests will come back first and if his clotting time is too long, it will indicate a deficiency and we will begin a blood transfusion to give him, hopefully, longer clotting times and avoid any internal bleeds. The result of the Factor X levels will take longer, and those will determine if it is a severe deficiency, like Izzy, or a moderate deficiency, like Abbey and I. Dr. Tarantino, our brilliant hematologist says we are in unchartered territory as there is no documentation on treating a newborn at birth for potential Factor X deficiency. This treatment is historically successful in treating traditional hemophiliac newborns and avoiding brain bleeds, and he feels comfortable in this course of action, but there is always that unknown. I have avoided doing my own research this time. I spent many hours after Izzy's death and diagnosis looking for answers and explanations and information, and I don't want it this time. I'm not sure how I'd make it the next 10 weeks with an even higher level of impending doom hanging around the corner. I haven't let anything in the house bigger than 6 months in size. When the girls talk to me about what it'll be like for JT at Christmas, or when they talk about him at the softball fields next summer, I just say "we'll see." I can't stand to hear them make plans and then have them dashed and their hearts broken again. I added a high chair to my registry and felt foolish for doing so, because I might not need it. And I assume if I'm feeling like this, selfish and stupid and horrible for having another baby, then other people must be thinking the same or worse. It's been a very lonely pregnancy because Duffy hasn't been the same either. He's withdrawn, hasn't talked to JT but a few times, and is very remote from me too. In my mind he's keeping his distance so he won't get too attached in case it goes wrong. But I miss him and how excited he usually gets and how he talks to the belly and says ridiculous things. I wonder if this is normal when having a baby after a loss like ours.