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CF Letter 2019

Dear friends and family,

I hope you all are having a happy and healthy 2019! The Great Strides CF Walk is just around the corner, and we are gearing up for a great walk day!

Since my last CF Walk letter, my health has had its ups and downs. Just before the CF walk last year, I got the sickest I have been in awhile and had to fight off pneumonia with the help of 4 weeks of IVs. I also had to do IV antibiotics in August and November. However, I have stayed relatively healthy in 2019, and for that, I am extremely grateful! Although I’ve had to fight off 2 colds, my body has been able to get through it without needing IV antibiotics. While I know I will need another round of IVs eventually, I am thoroughly enjoying being IV free. I credit this to the amazing CF therapies available to me, my compliance to my treatments, and all of your prayers for my health.

I continue to take 30+ pills a day including enzymes to digest my food, vitamins and supplements that my body cannot absorb enough of naturally, and other prescriptions that help my body stay as stable as possible. When people see me take my pills, they are always astonished at the number of pills I take every meal, but these pills are necessary to my very survival.

Because my health has maintained relatively stable, I have been able to continue working as a speech-language pathologist with SpeechCare in Dallas. I love my job and love being able to help people communicate better. I believe that my CF has made me a better therapist because I have learned how to show people compassion, how to care for people appropriately, and how to combine my knowledge of speech therapy with my love for helping people. Over the summer, we also went to Yosemite with my family. While I had to use oxygen because of the elevation, the sites of Yosemite were truly breathtaking (pun intended), and God’s creation was awe-inspiring. Eric and I also celebrated one year of marriage in July. I am so blessed to have a husband who loves me so well and who is in this crazy journey of life with me 100%.

In the past few years, there have been many exciting developments in CF research. More and more drugs are coming down the pipeline, and people born today with cystic fibrosis have a much different life ahead of them than those born twenty, fifty, or one hundred years ago. Without you, these new drugs and discoveries wouldn’t have been possible. The Cystic Fibrosis Foundation funds CF research, like drug developments, from the donations they receive throughout the year. In the 1950s, many people born with CF didn’t live through elementary school. Now, many people with CF are living into their 30s, 40s, 50s, and beyond, all thanks to the never-tiring efforts of the Cystic Fibrosis Foundation.

My family and I will be walking at the Great Strides CF Walk on May 4th in Dallas, and we would be so honored to have you walk with us. This year, I am the Dallas Great Strides Ambassador, and I am so excited for this opportunity. Great Strides is an amazing event, and it really is special to be part of. We also would appreciate any donations to the CF Foundation. Every penny helps us get closer to our goal of finding a cure for Cystic Fibrosis. Click on the link below to sign up to walk with us and/or to donate to our team!

Thank you for your continued love, support, and prayers.

With love,

Emily

Comments

  1. AnonymousAugust 11, 2019 at 12:39 AM

    Irrespective of receiving daily oral or future injectable depot therapies, these require health care visits for medication and monitoring of safety and response. If patients are treated early enough, before a lot of immune system damage has occurred, life expectancy is close to normal, as long as they remain on successful treatment. However, when patients stop therapy, virus rebounds to high levels in most patients, sometimes associated with severe illness because i have gone through this and even an increased risk of death. The aim of “cure”is ongoing but i still do believe my government made millions of ARV drugs instead of finding a cure. for ongoing therapy and monitoring. ARV alone cannot cure HIV as among the cells that are infected are very long-living CD4 memory cells and possibly other cells that act as long-term reservoirs. HIV can hide in these cells without being detected by the body’s immune system. Therefore even when ART completely blocks subsequent rounds of infection of cells, reservoirs that have been infected before therapy initiation persist and from these reservoirs HIV rebounds if therapy is stopped. “Cure” could either mean an eradication cure, which means to completely rid the body of reservoir virus or a functional HIV cure, where HIV may remain in reservoir cells but rebound to high levels is prevented after therapy interruption.Dr Itua Herbal Medicine makes me believes there is a hope for people suffering from,Parkinson's disease,Schizophrenia,Lung Cancer,Breast Cancer,psoriasis,Colo-Rectal Cancer,Blood Cancer,Prostate Cancer,siva.Fatal Familial Insomnia Factor V Leiden Mutation ,Epilepsy Dupuytren's disease,Desmoplastic small-round-cell tumor Diabetes ,Coeliac disease,Creutzfeldt–Jakob disease,Cerebral Amyloid Angiopathy, Ataxia,Arthritis,Amyotrophic Lateral Scoliosis,Fibromyalgia,Fluoroquinolone Toxicity
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