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Discoveries in the World of Cleft Palates

In 2001 research scientists in England isolated the gene which is responsible for allowing cleft palates to occur.

cleft 3 months

In 2003 these same researchers, at the same time as French researchers made the same find, discovered that a certain protein within this gene was missing which was needed to direct the cleft area to close.

In many areas of the world the rate of children born with cleft palates is 1 in 500 and in a few areas it is 1 in 600.  The leading thought of the cause of cleft palates was malnutrition and alcoholism on the part of the parents.  The researchers could see genetic patterns emerging but were not certain.

Poor Nutrition and Alcohol seem to play apart in the outcome but they are only contributing factors.

Now Cleft Palates are not a glamorous illness or abnormality.  As a matter of fact in the US it is extremely hard to get a good fundraiser going to make the necessary repairs to the facial structures let alone the learning and counseling needs of the individual.   Seems like folks would rather say “tut, tut,” you did not eat well enough or drank too much in your family tree so figure this out and take your own care – it is in your family tree.

“You can always sue for repairs.”

Yes, yes, I know in nearly every state the original “closure” surgery of the facial cleft is usually done for free, when you can get the child in for surgery.  No insurance company covers the closure, but most states have a fund to cover the closure so that the infant will not starve to death.  The rest of the repairs are up to parents and families to get taken care of as best they are able.

If you wish to pick a particular surgeon to do the facial repair work, well you must pay individually for that request.

After you have spent so much money on repairs and assistance, it is most exciting to see that researchers in other countries are pursuing new understanding.   How exciting for your child to think in the near future researchers in England and France will be able to find a way to manipulate that missing protein in that gene and make the earth a cleft free zone.   My child was ecstatic – sign her up right now for gene therapy – because this is truly a great thing.

In the US the fundraising focus has been on raising money to send skilled surgeons around the world to do closure surgeries for free for the world’s poorest children.

Because Cleft palates are not glamorous abnormalities and in the US we must fund raise for research for drugs , procedures, and development; folks here would rather the individuals who are wealthy enough pay the full price for the repairs.  It is no surprise to me that in the last three weeks of research on this subject all of the new information is coming from countries with socialized medicine. Researchers get bonus pay for delving into problems just such as this.

I have spent this past week writing to my public officials, my elected officials and research facilities all over the country.  I have written to the research facilities in England and France to thank them personally for their tremendous effort on behalf of children.  I dashed off a quick note to our local paper for recently raising awareness once again.

I will also send a letter to the huge Smile Fundraising group to let them know about the research and the results so when they send all these doctors and medical people around the globe there might be a preventative solution  at hand.  I know they will just start harassing me with more fund raising literature but I think at least one person on staff should know what I know.

I have also written to the Bill and Melinda Gates Foundation, as they will probably already know about this research and the newest developments and are probably working on solutions right now.  They will ask me how my child is doing and they will really want to know.

Without huge amounts of education for the general public, I hold little hope for the health care systems in the US.   People just do not want to know about the real problems and costs.

What is your hope for health care in the US?  Do you know of other non-glamorous abnormalities that the insurance companies ignore?  Have you had to do battle with insurance companies or health care systems for yourself or a family member?  How would you get the word out?

13 Responses to “Discoveries in the World of Cleft Palates”

  1. Jannie Funster Says:

    Well, as you may recall I am from Canada where we have our healthcare covered. Of course, we pay for it in very high taxes. But it is a very comforting feeling to know if you get critically ill you won’t be in jeopardy of losing your home, due to liens. I am not sure, but I am assuming cleft palates are something that the Canadian healthcare system will pay to cover, both to close the hole and then cosmetically repair.

    My personal opinion is we could be spending less on foreign wars and more on healthcare.

    No, I personally did not have to battle any insurance companies. That must be very difficult, to say the least.

    And thanks for the work you are doing, Patricia. You are probably helping the cause more than you realize.

    Jannie Funsters last blog post..Song Quest Two

  2. Vered - MomGrind Says:

    The health care system in the US is problematic. Obama seems to be intent on making changes, so we’ll see how it goes.

    We need to remember though that in many places where there’s universal health care, taxes are extremely high and coverage is very basic, so people still have to buy separate medical insurance or pay privately when they want something that isn’t covered.

    Vered – MomGrinds last blog post..The Psychology of Advertising

  3. Mark Says:

    Thank-you for creating awareness on this issue. This is a great discovery!

    Marks last blog post..Resonating With Teachings

  4. Dot Says:

    Wow, how do you find the time to do all that? I’m glad you’re doing it and glad to hear of the research.

    In answer to your questions, I was diagnosed with lupus, a very unglamorous disease, in 1990. (The diagnosis was later changed.) I had heard of lupus but had no idea what it was. I discovered that people I talked to generally either didn’t know what it was or confused it with leukeumia.

    There are two national lupus organizations (instead of one, which would be more powerful). Eventually they began an awareness campaign telling people that lupus was more common than AIDS, sickle cell anemia and a bunch of other, more well-known, diseases. Lupus patients are 90% women, which may also explain why awareness is so low — sexism.

    Since I have little energy, due to another illness, I don’t personally fight with the insurance company. The place where I work has a designated representative for that, and if she can’t get results, I turn to the doctor. My main doctor for this is very good at knowing what the insurance company wants. If he also fails, I just skip it. I don’t want to spend my precious energy on disputes, even if it means I have to pay more.

    Health care reform is desperately needed, in my opinion, here in the U.S. Yes, doctors are being short-changed right now. However, a person’s life should not depend on whether they have enough money to be saved.

    Dots last blog post..Under the Weather

  5. Tony Single Says:

    I imagine that universal healthcare can be an expensive road for any government to take, but I would honestly prefer them to hike up tax rates if it meant we could have that. Everyone can afford to breathe a little easier when basic things like healthcare are taken care of. We’ve had a great universal healthcare system here in Australia, but it seems as though it’s being eroded more and more by the day. That really is a crying shame.

    I must admit that I had not really come across the whole cleft palate issue before reading this, Patricia. Thank you for educating me.

    Tony Singles last blog post..An Affair to Forget [Trottersville #115]

  6. Patricia Says:

    Jannie,
    Yes, Canadian Health Care is very good system and they are able to accomplish much more research than in the US. I watched my Aunt’s journey through the stages of her dying and other than a 6 week sojourn in a rather old facility to get into one of the new death and dying centers – she did not need an advocate on her side 24/7 as in the case of my mother’s last few years and she ran out of funds at the end because my mum lived longer than her money.
    I wanted to give a shout out to some good work and good outcomes and the possibility of an exciting future for some forgotten folks.

    Vered,
    Yep exciting news and extremely high taxes and certainly not a perfect system. As a small business owner in the US, we pay giant amounts of taxes for schools, public transportation, libraries, public services and health care, etc. Then we have paid every penny of our child’s needs – medical and academic. Once a nice doctor after performing a 30,000$ surgery and the insurance company paid him $4,000 turned around and only charged us $1. Cleft palates are not considered a disability so we could have gotten divorced and she and I go on welfare to get her medications covered or we could pay every penny.
    My only guilt is that we short changed out other daughter’s educations….then you add sexism to their lives – I can’t even go there.

    Mark,
    It is a great discovery and deserves a shout out.

    Dot,
    I just want to keep this information out in the world. I sure hope the powers that be can help fix our health care system, I am hopeful.
    I keep attempting to be a noisy gong, but I sure do want to say thank you to the people of the UK and France for putting their tax dollars into this research. And say thank you for all of the people who do not know – yet!

    I think as a people we need to keep telling out stories and then more people will know…and up will come the shouts of a joyful noise that resolution is at hand – a mighty army was brought to their knee with one word.

    Thank you for telling your story here. Good recovery to you

    Tony Single,
    It is just impossible to know all there is to know, but being aware and as knowledgeable as one can be is so important so that one does not loose a good thing. When we get complacent then we stand to loose a good thing. Laughing is not being complacent – so keep us laughing good soul.

    Wow a whole world with out cleft palates….would that not be amazing! and a healthy sign?

  7. Sara Says:

    Patricia — Thank you for educating me about this. I didn’t know that the full repair of a cleft palate wasn’t covered by insurance. Somehow it sad to think, we would just repair just enough for a child to eat, but no more. Good for you for speaking up about this issue.

    In one my posts, I wrote about my battle to get private health insurance as I was getting a divorce and would be removed from my husband’s group plan. It wasn’t a nice experience and taught me things I didn’t want to know about insurance in the USA. But my situation is nothing compared to health care for children!

    Can you leave a site where we can either voice our concern or make donations to help regarding coverage for cleft palate repair? Thanks for the post:~)

    Saras last blog post..More than just 5 words in a journal

  8. Patricia Says:

    Sara, You are welcome – it is a big issue.
    Each state in the US handles donations for Cleft palate repair differently – Mass. just pays for it all in their taxes! In my state, the Cleft Palate Review Board meets through the Department of Health so all donations are turned into them and they process the funds out as needed.

    Most folks give through the largest “Children’s Hospital” in their state

    Operation Smile is the overseas donation group where all the movie stars do ads for them and make big donations.

    University of Washington has done the most work on the brain lesions that often go hand and hand with a cleft palate….and that research is parent supported.

    Just about every plastic surgeon I know will get the money to the correct place within your state. (Not the weirdos and crooks, but the legit ones!)

    Thank you for asking

  9. Jannie Funster Says:

    Now, some good legislation to help a cause like THIS would for sure be worth signing about.

    And I’d insist such paperwork contain not so much as a hint of a soupson of a whiff of a mention of a muffin – fresh, stale, hard as a rock, green with mold or otherwise.

    Whoops, sorry to mention muffin here.

    Patricia, thank you for being my friend. Your comments mean much more than you could ever know.

    Jannie Funsters last blog post..Song Quest Two

  10. Patricia Says:

    Jannie,
    The pleasure is all mine!

    Say I lost your email address in all my computer internet complications and I did not find it on your blog…could you send this IT illiterate person it again? I would like to have it…

    Thank you so much my dear friend

  11. Jannie Funster Says:

    Yes, I WILL!!

    By e-mail of course, and not here because Boris the crazy violinist (the one who lives with 17 cats,) is trying to send me his Viagara recipes again.

    Oy-vey.

    Or is it Oi-vay?

    Oil of Olay- vey?

    Jannie Funsters last blog post..Song Quest Two

  12. Patricia Says:

    Jannie,
    Thank you :)

  13. Happy Birthday, Let’s Live Forever! — Let's Live Forever! Says:

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