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CF letter 2016

Dear friends and family,

            Hello!  I hope you all are having a wonderful start to 2016. It’s hard to believe another year has come and gone and here I am again, writing my yearly CF letter. Since my last letter, I graduated Summa Cum Laude from Baylor University with a bachelor’s degree in communication sciences and disorders, a minor in linguistics, and BIC Honors. If you recall from my letter last year, only 30% of CF adults graduate college, and I am so proud and thrilled to officially be in that minority! Over the summer, I had a port replacement surgery. My pediatric port just wasn’t cutting it anymore; it was finicky and didn’t like to draw back blood.  My new port sticks out more obviously than the pediatric port, but it works so much better! In August, I started graduate school at the University of Texas at Dallas for speech pathology. UTD has one of the best speech-language pathology programs in the country, and I am so thankful to be a part of the program! At UTD, I’ve had the opportunity to take several interesting classes and participate in two very different practicum experiences. I absolutely love learning about my field, and I am excited to continue to learn and grow as a clinician. After I finish this current semester, I will have three more semesters until I graduate with my master’s degree. Grad school is flying by, and I’m trying to soak up as much as possible!
           
            Being in Dallas has been an adjustment for me. It’s been hard to be in a new city with new people in new situations. I had to switch CF care centers, which has been a positive change. My new doctor is willing to try new things and does not resign my current state of health to “my new baseline”. Toward the end of September, CF was kicking my butt. My oxygen was low, and I was struggling to maintain my daily activities. My doctor made sure that my numbers came back up and that I returned to see her weekly until I was back stable again. In January, I went inpatient at Clements University Hospital in Dallas for a few days. I went on an antibiotic that I had previously had allergic reactions to about 10 years ago, but my doctor wanted to try the antibiotic again because it might fight the bacteria in my lungs better than the antibiotics I regularly go on. Luckily, I had no allergic reaction, and I did three weeks of IVs at the end of January through February. (Side note: I was forced to miss some of school during the period I was on IVs, and my professors and supervisors at UTD were AMAZING. They worked with me so I wouldn’t have to sacrifice either my health or school). I also began participating in a Vertex study in January. This study is supposed to target the underlying cause of CF and could potentially change the face of CF treatment. It has been a privilege to be part of a CF study of this magnitude, and I hope and pray this drug makes a difference!

            This is the time for CF research. Companies like Vertex are starting to really understand CF and the best ways to treat, and hopefully one day cure, CF. By raising money and awareness for cystic fibrosis, we are putting the spotlight on CF research. Every donation, every prayer, every Facebook post, every mention of CF helps! My family and I will be participating in the annual Great Strides Walk in Austin on May 7th at the Austin Zoo. We would love for you to join us! If you would like to sign up for the walk or would like to donate to the CF Foundation (or both!), go to the link at the bottom of this page. Thank you all so much for your love, support, and prayers! CF can’t be beat without the help of dear friends and family like you all. I am very grateful to have all of you in my corner!

Sincerely,

Emily Ingram


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