Accept Your Child Has Hemophilia

Hemophilia is a rare genetic disorder, primarily affecting males, that has existed throughout history. Although anyone can be born with it, regardless of race or religion, most people go through life never knowing anyone with hemophilia. Many people are unaware of the technological advances that are giving children with hemophilia normal lives, and the general public still thinks these children are fragile. So what do you do when this extremely rare disorder has somehow found a way into your personal life?

Hemophilia's rarity may be one reason parents struggle to accept it. I know this was true for me, as a parent of a son with hemophilia. Fortunately, as we learn more about hemophilia and see all the marvelous things our children can do -- and I will be the first to brag about my accomplished son -- our worries subside, and I now focus once again on the miracle of my son. But at first, you'll probably go through a transition period when your fear of the unknown sometimes outweighs the reality of how manageable hemophilia really is.

Many of the initial feelings parents experience boil down to one thing -- a sudden lack of control. As adults, we all strive for control in our lives. We choose where we live and someone to live with, we vote, we manage our money, we determine our careers, and more. We can even choose when to have children, but when we hear that our child has hemophilia, our control seems to weaken. As parents, we want to protect and nurture our child, and hemophilia seems to threaten our ability to do that. But does it really? Or is this a misconception, molded by myth and lack of information and exaggerated by our normal anxieties as parents?

To me, the initial months after my son's diagnosis felt like I was standing on the edge of the Grand Canyon, on a moonless night! I could see nothing and I feared everything. I felt I would fall at any moment into a yawning black pit, where hundreds of dangers waited. Eventually, I began learning more about the disease, and gradually shed light into this canyon, which I can now navigate with confidence.

'The more you learn about hemophilia, the more control you will feel you have, because you'll make better decisions. You'll soon shatter those myths about hemophilia and you'll learn about the wonderful possibilities for your child. And the more experience you have, the more you'll know what to expect. Pretty soon, hemophilia will become a part of your life as a normal routine.'

Here are some other ways to gain information, and help, in dealing with hemophilia:

1. 1
   Find a Specialist

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   Contact your local hospital and ask if any local doctors or organizations are trained and equipped for satisfying the needs of a hemophiliac. Aside from local doctors, the internet provides access to national and global hemophilia organizations which manage databases of hemophilia specialists.

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2. 2
   Search the Internet for Information

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   Websites are a great way to find support groups as well as specialists. You can try Google, or visit one of the following sites.

    

   1. Around the World: The World Federation of Hemophilia has a searchable directory of daily updated treatment centers which can be accessed at http://www.wfh.org/en/page.aspx?pid=1264
   2. In the United States: The Centers for Disease Control and Prevention website has a search engine, located at https://www2a.cdc.gov/ncbddd/htcweb/Dir_Report/Dir_Search.asp, which is useful for finding Hemophilia Treatment Centers throughout the United States.
   3. In Canada: The Canadian Hemophilia Society offers a similar treatment centers list at http://www.hemophilia.ca/en/treatment-centres/.

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3. 3
   Locate Support Groups in Your Area

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   Ask your doctor if they know of any local support groups. Also, check the posting boards at your local library.

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• Knowledge is power. Research as much as you can about hemophilia, so you have a better understanding about the disease.
• Don't be afraid. Hemophilia is not something you need to fear. It is a very manageable disease.
• Follow your doctor's instructions regarding treatment. Your doctor is one of the keys to managing hemophilia.

If you have problems with any of the steps in this article, please ask a question for more help, or post in the comments section below.

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