About Cystic Fibrosis

1. Hello Myname is Noelle I have Cystic Fibrosis

2. I am just like every other kid On the outside but inside I have greater challenges in my life.

3. I smile just like all the other kids

4. I am curious I am silly

5. And I love to play But sometimes it is more difficult for me

6. This is my life outside of what everybody else sees! Countless hours spent connected to my Vest

7. And connected to My nebulizer . Though the treatments work to keep my lungs clear, I still feel like this is all punishment for something that I didn’t do!

8. All just to be able to breathe Like you

9. My vest helps to loosen the thick mucous that fills my lungs . The mucous holds in the many germs that cause frequent infections and scarring to my lungs.

10. But I get tired of the daily routine the strain of trying to do what comes naturally for everyone else

12. My pancreas was blocked When I was born. I dropped from 95% to 5% on my growth chart within 1 week of birth. I have to take enzymes with everything that I eat so that I can absorb the fats and nutrients.

13. Even with Enzymes My body can only digest approx. 60% of what I eat and I often lack certain vitamins due to inability to absorb fats.

14. Even with enzymes and supplements Many are unable to maintain their health through diet. They have to receive supplement through feeding tubes.

15. I am also at risk of developing Hyperglycemia/Diabetes due to inability of my pancreas to make enough insulin and inability of my body to use the insulin normally

16. This is my friend Izzy The one friend that But we must I have who remain Understands separated by the disease that we share!

17. The germs that do not cause Infection in most peoplecan cause severe and difficult to treat infections in us. One infection can lead to hospitalization and months of IV and inhaled antibiotics for us.

18. The recurrent infections Create scar tissue inside our lungs. Eventually the increasing scar tissue makes it impossible to breathe. Our biggest fear is the day that our name must be placed on the transplant list! And for many of us, that phone call will not come in time!

19. I have a team of specialist At Brenner’s, which I have to see every three months

20. Respiratory therapist Sandy Brim RCP, RRT Pulmonary Function Testing

21. My Doctors, Nutritionist and Social Worker Dr. Leslie Bone and Dr. Holly Hanes Dr. Karl Karlson, Carolyn Crump (nutritionist), Id Norrell(Social Worker)

22. And my favorite nurses-outside of my mommy-of course  Kay Ashburn, RN Barbara Barreto CNA

23. They work hard as a team to make sure that every angle of my healthcare is kept in check They are my “healthcare family”

24. Each year we walk for Great Strides Which helps with Funding for the Cystic Fibrosis Foundation. Each Step we take is One step Closer to A cure!

25. Please join me in my fight for a cure Not only is CFF dedicated To funding research but they also offer assistance with the costly medicines and treatments, which without insurance, would be almost impossible to afford.

26. Great Strides 2011 http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7275&idUser=181332 Please follow this link to donate to Team Noelle. You may also join my team through this same link. I will be walking on April 30th at Tanglewood in Winston Salem.

27. Through Awareness, we understand Through understanding, we unite Through Uniting, we overcome Someday we will watch cystic fibrosis wilt as quickly as the sixty-five roses do!