Journal Entries from the 2018 National Conference: Women with Hemophilia
Date: November 9, 2018 at 10:39:00 PM EST
Today we arrived in Grand Rapids, Michigan for the 2018 National Conference: Women with Hemophilia. I can’t believe that this is happening or that I’m here, being a part of this wonderful occasion where a new door is opening for women with bleeding disorders. The organization went above and beyond in the preparation of this event, all the way from the informative seminars to the magnificent hotel to the rooms with the most amazing views! The conference will have sessions covering all kinds of subjects, like diagnosis in women and treatment and care, not only about the body, but also about other areas of wellness that sometimes we ignore and are very important for our physical and emotional well-being. According to a guide I was given, those areas include: physical, social, spiritual, emotional, environmental, financial, intellectual, and occupational areas. Women came from all over the country and as far as Alaska!
During the opening reception, l heard so many stories of women whose medical condition and concerns have been ignored for many years, but now they are receiving the care and treatment they need and deserve. Kudos to organizations like The Foundation for Women & Girls with Blood Disorders who are raising awareness in this field. Representatives from that organization were delighted to hear I was a client of Hemophilia of Georgia, who they say is one of their bigger supporters. It is always so nice to attend conferences and realize that we are so lucky to live in Georgia and be part of HoG. Someone asked me how big HoG was and I responded that the building and the staff are that of a moderate size one, but the work that they do is that of a giant one. Later on, I described all the wonderful programs and assistance they give to their clients and even if I was bragging a little bit, it was ok because I knew in my heart, I was saying nothing but the truth.
Date: November 10, 2018 at 07:30:00 AM EST
Last night it snowed! I woke up to the most amazing views. I won’t have time to go out because our days are full of activities, but just to have been able to see it brought me so much joy and happiness!
Date: November 10, 2018 at 11:41:00 PM EST
It’s almost 12 at night and even when I’m tired after a full day of conferences, activities, and socializing with other women with hemophilia, I find myself unable to sleep. Today, we heard so many stories of the struggle women, like me, have found to receive treatment for their medical condition. I can’t believe that with factor levels below 40 percent (in some cases below 10 percent), they have had to fight to be heard by their doctors and to receive the necessary treatment to recover from a bleed, and in some cases to survive. We listened to women who lost their whole families to the HIV crisis in the 1980s and the difficulty women with bleeding disorders face to be diagnosed and treated. The sad part is that so many don’t even want to know. They don’t want to face the hardship of knowing that they also have hemophilia and will have to fight for their treatment, their insurance coverage because of having a pre-existing condition, and, worst of all, the stigma that still is associated with having a bleeding disorder, especially in other parts of the world. We heard of engagements broken because of men refusing to knowingly marry someone who can give them a son with hemophilia and from women crying because they, themselves, don’t know if they want to bring a son to this world who may have to overcome so many obstacles to live a normal life.
After one of the sessions, I found my daughter crying outside the conference room, overwhelmed with sympathy for all those women and afraid of finding out that as a carrier, she may have to deal at some point in her life with some of those issues. I hugged her because I know that pain and worry, but I also know that at the end of the day, things will be ok and, like a big puzzle, all the pieces of your life will fall in the right place and at the right time to create your very own masterpiece.
If my life were different, it may have been easier, but I never would have had my wonderful son Louis. And who knows, maybe without his hemophilia, he wouldn’t be who he is and wouldn’t have brought so much joy to our lives. And my daughter, Michelle, is such a strong, resourceful, and smart girl, but who knows, maybe it was the struggles she had to go through with her brother, as his big sister and protector, that shaped her to rise above all the obstacles in her way and became such a passionate health advocate. I couldn’t imagine a world without my kids and if I had to walk this difficult path in order to have them the way they are, so be it. And I would do it a thousand times again!
But not all was work and listening to sad stories. We also heard from doctors and organizations that are working hard to change how women with hemophilia live and receive medical care. We made new friends, we had music and food, and had the chance to get together to paint and socialize and at the end of the day. I really believe that we are better because of all the experiences we had at this amazing first conference for women with hemophilia.
Date: November 11, 2018 at 05:26:00 PM EST
I’m now at the airport’s gate, waiting for my flight back to Atlanta. This conference was an emotional roller coaster that opened my eyes in so many ways. And I have come to realize that we have been very fortunate to live in Georgia and be part of HoG. After hearing so many stories, some of them heartbreaking, I see that we have been protected by our hemophilia chapter. They have fought the big battles on our behalf and sheltered us from the ugly side of this medical condition. From the social workers helping us figure out insurance issues and payment concerns, to the nurses attending my son’s school and providing education to all his teachers about his medical condition. I remember an instance where my son wasn’t allowed to leave the classroom or use his phone to call me. His teachers didn’t believe he was having a bleed in his ankle because they couldn’t see the blood. By the time I picked him up and was able to get him to his treatment center, he had lost partial mobility in his ankle and had to endure painful therapy to recover his full range of motion. All it took was a call to his HoG nurse and in a matter of days she had a meeting at school with all the staff that had to do anything with my son, the assistant principal, and school board nurse. A form was signed, and we never had to endure that problem again.
As always, after attending bleeding disorder conferences, I feel empowered and, this time, I’m ready to share with my fellow women with hemophilia what I learned. Because there is strength in numbers and, if we learn more about our condition and educate ourselves, we will be able to assert our rights and receive the treatment we deserve. I’m sure the staff at our wonderful chapter will be beside us, fighting for us, and providing the same support that they have given our sons, brothers, and fathers. And please, if you are a woman who has someone in your family with hemophilia, have your factor levels checked because the best time to advocate for yourself is when you are not bleeding.
