Each month, I choose a cause to donate a portion of the profits from online sales at Body Language Boutique. I believe that giving is important and a little like a boomerang. So each month, I decided what the foundation or organization will be based on a few things and go from there. Sometimes it will be a local event or charity or even a family with a sick child that needs help. Sometimes its a larger spectrum. (April is Autism Awareness – its not too late to help out and go place an order!) So for May, the choice was fairly simple. Depending what source you go to you will find that May is Cystic Fibrosis Month. CF is a SERIOUS disease and one that should be brought to the forefront a little more (I guess this is like most diseases, lets speak up!) Go to Cystic Fibrosis Canada to learn more and learn how you can help! I digress, one of my very best friends lives with Cystic Fibrosis Related Disease. She is such a humble person that you would never know it until you dig a little deeper. There is no crying and whining about it. I would cry all the time! She can’t smell! Can you imagine not being to smell? (Actually, I live with two stinky boys – maybe it wouldn’t be so bad sometimes!) And its something that I just take for granted – like when I told her the new lipstick I had in the store was amazing and it even smelled good. Because come on, lipstick does not normally smell good. (Click here to see what lipstick I am talking about. You won’t be sorry!) Well the lipstick is still amazing and it still looked phenomenal on her, but she missed out on the wonderful smell. Waawaa. Anyways, I asked her to share her story with us so we could have a little insight into what its like living with CF Related Disease.
In her words:
My name is Kayla, and for 28 years I have been living with Cystic Fibrosis Related Disease. Throughout my life, I have endured more than 20 surgeries, the first when I was only 2 years old. I had severe recurring nasal polyps, chronic sinusitis, allergies, asthma, an immune system deficiency, born with no sense of smell, and adenoid removal x 2. Test after test, Doctor after Doctor, medication after medication, everyone tried their best but no one could figure out why these polyps continued to grow, or why the sinusitis would not clear, which lead to surgery after surgery, bone erosion, pain, and a lot of unanswered questions.
It wasn’t until 2007, a fantastic Doctor by the name of Erin Wright at the University of Alberta Hospital, was certain I had some form of CF, and would not rest until he uncovered it. I was sent for pulmonary function tests, sweat chloride testing (which had already been twice prior throughout my childhood – inconclusive) and genetic testing. Normally, there is a general genetic test, that looks for certain markers on different chromosomes for all sorts of diseases. My test came back “normal”, but Dr. Wright was not satisfied. He requested there be a complete genetic test, one that would go deeper, and test for every mutation possible. And that’s where they found it. Right there, on chromosome 7, not in the normal “CF” location on that chromosome, there was a mutation.
I was then diagnosed with a rare form of CF related disease, one in which there were very little knowledge, and very little research. However, all of my sinus issues over the years could now be explained – and it was a relief to know what the actual problem was, to put a name to it.
It’s been 4 years since my last Nasal Polypectomy. We have found a treatment plan that works to help keep the polyps at bay, the swelling down, and the headaches at a minimum.
I am also a carrier of CF, meaning that if my husband was to also be a carrier, there is a chance our children could have been born with CF. My son has already been tested as he was exhibiting signs, using the sweat chloride method, and it was negative – Thank God! My daughter has yet to exhibit any signs, so we are content that she will be just fine.
At this point in my life I am thankful. I look around and I have been blessed with so many things. My life could have been dramatically different, so I am grateful that my CF diagnosis was very mild compared to that of others. How does the saying go? If we all threw our problems in a pile, how quickly we would take our own back.
Here we are. Love this lady more than she could ever imagine (And check out that awesome smelling lipstick that she can not even smell!)