Thursday, March 6, 2014

Because You NEED To Know

(oh, that there were someone who would listen to me and try to see my side of this argument....)
~ Job 31:35a, TLB ~
 
March is hemophilia awareness month.

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.

THE FACTS

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.
 
There are different Types of Hemophilia
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.
There Are Different Severity Levels of Hemophilia 
Depending upon the clotting factor activity levels, an individual can have mild, moderate, or severe hemophilia.  The severity of the diagnosis remains the same throughout a person's lifetime.

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
  • Hematomas
  • 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
 THE FEELINGS

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!"
I would add so many other personal feelings to this stream of parental thoughts, but I will keep it brief.  First, I would tell you that hemophilia is one of the most expensive genetic disorders to treat.  Currently, at our son's size, he is using an estimated $260,000 per year in clotting factor alone.  That does not include the hospitalizations, extra expensive dental care that he must receive, and other ancillary expenses.  The hard part is, how do you help him gain awareness to be able to control his own medical expenses and self-advocate without also making him feel like an undue financial burden on the family?  He's a smart boy.  I don't want his mind wandering into that self-condemning territory.
 
The other thing I would tell you is that living with hemophilia in your household is like a daily stroll through a mine field.  Things may be fine one minute, and the next, BOOM, there's an internal bleed that requires hospitalization; BOOM, your daughters were just diagnosed as carriers; BOOM, the girl down the block doesn't want to babysit for you because your son's illness makes her too darn anxious; BOOM, your husband just lost another job because his employer found out what a drain he is on their insurance plan.
 
For our family, it has taken more than the possibility that some cure or better treatment is within sight to keep hanging on.  Our son developed severe anxiety after a bad hospitalization at 5 years old, and it has taken years to help him cope with the every-other-day IV infusions.  We have lacked family support.  People say terrible things.  We have been marginalized and judged.  If our hope was not in the Lord, we would have no hope at all. 

Yet, when we tie our son's blood to the powerful blood of Jesus Christ, we have joy beyond the struggles of this life.  We are strengthened and enabled by the One who bled for us.  If He took the nails for us, we can take the needles for Him.  In Jesus we gain eternal perspective and perseverance.

Now that you know more about what families like ours live with every day, please...
  • Support them.
  • Pray for them.
  • Educate others around you. 
PRAY:  Father God, thank you for the gift of hemophilia.  With our pain comes great privilege.  Help us to wisely use the platform You have given families like us.  Calm our stressed hearts, and keep those we love safe.  Thank You, Jesus, for shedding Your blood for us, so we know that hemophilia does NOT have the final say.

*Hemophilia facts & figures through the Hemophilia Federation of America

4 comments:

  1. Thanks for sharing. Now I know why they compare Borderline Personality Disorder to Hemophilia as being the Hemophiliac of emotions. It's the "BOOM" factor with the emotions. One minute happy the next angry. Also, it is so encouraging to read how "hemophilia does NOT have the final say". To God be the glory!

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    1. Thanks, Ann. I guess we can all be certain that where God calls each of us parents, He also equips.

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  2. Hemophilia is not something about which I know a whole lot. So I am glad to read your post. Will share it around, because you never know who needs to hear something.

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  3. Important information. Thanks for sharing!!

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