While this is a rare genetic disorder affecting an estimated 20,000 Americans, any person reading this blog or involved in this ministry to parents raising children with special needs of any kind should have interest in this diagnosis. If not for hemophilia, this ministry would not even exist. It was when God found us crying out for help that He sent my husband and I out to serve others. We saw the void in faith support for parents like us, and we obeyed.
There is an entire army of parents out there just like us, crying out for help, support, and understanding. Like Job in today's verse, these parents are often falsely accused and misunderstood. They want to be heard and respected, just like every other parent out there.
First and foremost, these parents would want you to know the basics of their child's diagnosis. Falacies and ignorance abound, so these moms and dads would want you to know:
It (hemophilia) affects mostly males, as it is an X chromosome linked condition. Hemophilia affects 1 in 5,000 male births in the U.S. and approximately 400 babies are born with hemophilia each year. 400,000 people worldwide are living with hemophilia and about 20,000 are living with it in the United States alone. All races and economic groups are affected equally. People with hemophilia who have access to factor replacement therapy have a normal life expectancy.
Bleeding disorders are treated differently depending on what protein is missing in the blood. Hemophilia is one of the most common bleeding disorders and is classified as follows:
- Hemophilia A – Also called classic hemophilia, it is 4 times more common than hemophilia B, and it occurs when factor VIII levels are deficient.
- Hemophilia B – Also called Christmas disease, it occurs when factor IX levels are deficient.
- Hemophilia C – It occurs when factor XI levels are deficient
- Acquired hemophilia – A person can develop hemophilia as a result of illness, medications, or pregnancy. Acquired hemophilia is extremely rare and usually resolves itself with proper diagnosis and treatment.
These Are The Symptoms of Hemophilia
A person with hemophilia can bleed inside or outside of the body. People with hemophilia do not bleed more than people without hemophilia, they just bleed longer. The most common types of bleeds are into the joints and muscles. Other symptoms include:
- Nose bleeds
- Prolonged bleeding from minor cuts
- Bleeding that stops and resumes after stopping for only a short time
- Blood in the urine
- Blood in the stool
- Large bruises
- Easy bruising (unexplained bruising)
- Excessive bleeding with dental work or tooth extraction
- Heavy periods and/or periods lasting more than 7 days*
- Swollen, painful joints
All of these facts are informative and important. But even more important is to hear the hearts of parents we serve who are crying out for understanding and acceptance all while enduring frustration, judgment, and stress in raising a child with a bleeding disorder. I asked a few of them to privately share with me what they would want people to know, since this month is the time for awareness. Here is what these parents told me:
- "You cannot 'catch' a bleeding disorder."
- "My son bleeding to death from a paper cut is the least of my worries!"
- "When you ask about my daughter's bracelet (med id) and I tell you about her disorder I DON'T want your apologies..I don't take time to tell you about it to get an " I'm so sorry for you guys" I'm not sorry... In fact I am so grateful that of the many things that could have affected J it is something treatable and we can maintain a normal life..."
- "Just because my children have a blood disorder does not make them "sickly" or "frail". They can do most everything any other child does, they just need to be more careful."
- "I have a son and two grandsons with hemophilia and most importantly let them be boys!!!"
- "My hemos aren't made of glass or fragile."
- "They can be in a wheelchair one day- and walking the next. It can be T in the chair today & C in the chair tomorrow-- they're not faking."
- "My son isn't going to 'break' if you touch him, it's okay to play with him, and most importantly do NOT leave him out of certain play activities because YOU are scared of him. Let him be a boy!"
Now that you know more about what families like ours live with every day, please...
- Support them.
- Pray for them.
- Educate others around you.