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 gene is very remote (plus the fact that hemophilia is rare).
Here are 4 practical ways to be a hemophilia advocate:
Talk about hemophilia. In your school. In your blog. In your FB wall. In your tweets. Wherever your sphere of influence may be, talk about hemophilia. By doing so, you raise awareness on this still largely unknown disorder.
Volunteer. Whether you have hemophilia or you don’t, if you have t a heart to reach out to the hemophilia community, volunteer your services. You can organize psycho-social activities for the youth group, or a camp for the children or you can assist in the general meetings. Whatever way you think you can help, let your local hemophilia community know that you are willing and available to help.
Visit a sick person with hemophilia. Every now and then, a “blood brother or sister” gets sick. Visit him/her whether in the hospital or in his/her home. That someone will be grateful to know you care.
Be active in your local hemophilia group. While being “connected” in social networking sites like Facebook and Twitter is good, nothing beats being connected in flesh. So go, attend meetings of your local hemophilia community.
Raising a child with a special condition — whether hemophilia or something else — poses a different set of challenges. On top of that, living in a country like the Philippines where public healthcare is so wanting in so many ways, can add up to the daunting task of raising a child with a rare disorder like hemophilia.
Children with hemophilia have unique needs compared with others, even their own siblings without the condition. And yet, we parents need to be careful NOT to put our children with special needs inside a bubble. Below are some basic tips that may be helpful, particularly to parents in developing countries like the Philippines.
We’re back in the comforts of our home now. Star was discharged yesterday afternoon after being transfused with 14 bags of packed red blood cells and cryo-precipate.
Everything’s back to normal. Star woke up early today and made “dibs” (their term now for laying first claim on something) on the computer. Over breakfast she declared she would go to church early to serve in Sunday school. She’s a volunteer of the toddlers’ class and loves to “fan-girl” over cute little babies.
This girl continuously amazes me. One day, she passes out. The next, she doesn’t look any inch unwell at all. She is a carefree young lady who loves life and never lets anything get in the way. I guess it’s also her way of trying to defy a life-long disorder.
It’s never easy to balance between giving your child the most normal life possible and at the same time, facing the realities that her “normal” will never be the same as the normal-normal of people without disorders.
The downside of growing up with bleeding episodes is that it becomes your “normal” and you no longer distinguish what is suppose to be the “real” normal. I guess that is true with Star, as is with many others like her.
I have been like that too, believing that “normal” varies from person to person. My “normal” is having very heavy menses on the first three days that at times, I cannot go out of the house for fear of “flooding” the streets. Of course, that’s an exaggeration. But it’s too heavy that it’s too risky to go out.
Star and I always “quarrel” about keeping track of her menses. I insist that she crosses out the calendar the day it starts. This will make it easier for me to monitor her. As our rule of thumb, we’re suppose to infuse after a week of heavy menses. But she almost always forgets.
Don’t let anyone tell you what you cannot do. You can do it if you will. That is what I always tell my kids – including my now 13-year-old daughter Star, who was diagnosed with von Willebrand Disease (vWD) six years ago. VWD belongs to the group of bleeding disorders more known as hemophilia, where the person’s blood lacks the ability of clot.
Star is supposed to be a moderate “bleeder” but ever since she started having her monthly periods, I have second thoughts on the meaning of “moderate.” ….
I’ve been getting inquiries on where to buy factor concentrates in the Philippines. Factors are the substances in the blood that act in sequence to enable it to clot naturally.
People with bleeding disorders either do not have clotting factors in their blood or their factors are defective, causing them to bleed more than normal. Some bleeds are more fatal than others, and in fact, several patients (including my mother) died from bleeding. Infusion of factor concentrates is generally the best and fastest way to stop bleeding.