Our old CF Commercial that plays on MCTV. Still working on this years.

Thursday, March 27, 2008

Let's Learn About CF - Part 3

How is CF diagnosed? As in my previous "Let's Learn" posts my source is cff.org.

Most people (these days) are diagnosed with CF at birth or before the age of 2. A doctor who sees the symptoms will order either a sweat test or a genetic test to confirm the diagnosis.
sweat test is the most common test used to diagnose cystic fibrosis. A small electrode is placed on the skin (usually on the arm) to stimulate the sweat glands. Sweat is then collected and the amount of chloride, a component of salt in the sweat, is measured. A high level of chloride—a score of more than 60 mmol/L (a measure of concentration)—means that the person has cystic fibrosis. Scores between 40 mmol/L and 60 mmol/L are considered to be on the borderline and need to be looked at on a case-by-case basis. Scores of less than 40 mmol/L are considered negative for CF. The best place to receive a reliable sweat test is at a Cystic Fibrosis Foundation-accredited care center.
In a
genetic test, a blood sample or cells from the inside of the cheek is taken and sent to a laboratory to see if any of the various mutations of the CF gene are found. A genetic test is often used if the results from a sweat test are unclear.

Fortunately for Lil' Chris he was tested right away because the doctors knew both of his parents were carriers of the CF gene. M will elaborate more on this as she tells their story. The reason I say fortunately is because the earlier a child is diagnosed the better. It's so easy for CF babies to become malnourished if they are not being treated for their CF. Not because their parents aren't feeding them enough but because their little bodies just aren't absorbing the nutrients from their food. Lil' Chris started his treatment at just 2 weeks old which enabled him to grow at a more normal pace. I remember M telling me that the doctors were particularly happy with his length at his checkups each month because the taller he grows the more length he'll have in his torso & the better he will be able to breathe when he's older. That just blew me away. There are so many things to think about, so many areas that are impacted by this disease & so much that early diagnosis can help with.

I am now a huge proponent of parents being tested to see if they are carriers. I'm not saying this because I would recommend two carriers not to have children - that is a very personal decision to be made (with much prayer) by that couple & no one else. I am saying this because if you know you are both carriers then your child can be tested & possibly treated right away which can make a big difference. Never in a million years would I have thought that my sisters & I were carriers of a disease & yet, here we are. Thankfully our state now requires CF testing during pre-natal care but what about the states that don't? What about those who don't get the pre-natal care they need? These reasons as well as support for our little nephew are why my family & I are walking for Great Strides for CF this May. Not only do we need to raise money for CF research & financial support for CF familes, but we need to raise awareness about this disease! I encourage you to click on this link for GREAT STRIDES and look for a walk near you. We can all make a difference in our own small way & it's not just about the money. It's about getting people's attention. It's about being the reason that when a pregnant mom get's that call from her OB she recognizes what CF is & why it's important for the father to also be tested. It's about getting our corporations involved & walking for a cure! It's about showing our love & support to our friends or family who bravely & gracefully live everyday with CF. Walk for Lil Chris, walk for Tricia, walk for Alice, walk for Lauren, walk for Carmen, walk for the many others who need our support!

Thanks for your time tonight! D.

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