Cystic Fibrosis News Today Weekly Forum Digest

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In CF Patients, A Fumigatus Linked to Worse Respiratory Quality of Life

Sep 02, 2019 03:49 am | Cystic Fibrosis News Moderator

Replies: 0
The presence of the fungus A. fumigatus fungus is linked to lower respiratory-related quality of life in people with CF, a study has found. Learn more here.
What do you think of this information?

For CF Treatment, FDA Grants Priority Review to Vertex’s Triple Combo

Sep 02, 2019 03:47 am | Cystic Fibrosis News Moderator

Replies: 0
The FDA has granted priority review to Vertex’s new drug application for its first triple combination — elexacaftor, tezacaftor, and ivacaftor — for cystic fibrosis. Learn more here.
What are your thoughts about this news?

The Resiliency of the Human Spirit

Aug 29, 2019 05:08 am | Cystic Fibrosis News Moderator

Replies: 0
Our resiliency is what carries us through dark times, reminding us of all that is good in the world. Click here to read Tré LaRosa’s column on this topic.
Do you consider yourself to be a resilient person? When was the last time you were resilient in the face of a challenging time or experience?

I’m Failing the System and the System Is Failing Me

Aug 29, 2019 05:07 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read Bailey Anne Vincent’s column about why she feels the healthcare system has failed her.
Can you relate to Bailey Anne’s feelings?

MAC Lung Infections in CF Best Treated When Specific Bacterial Species Known, Study Finds

Aug 29, 2019 05:06 am | Cystic Fibrosis News Moderator

Replies: 0
A small study in CF patients with MAC lung infections found M. intracellulare the most aggressive species, but also the most responsive to antibiotics. Click here to read more.
What do you think of this study and its findings?

How I Processed My Pain in Order to Heal

Aug 29, 2019 05:05 am | Cystic Fibrosis News Moderator

Replies: 0
During a Thai massage, Brad Dell realized pain can undo pain and that for proper healing, it’s necessary to process suffering without rushing. Click here to read more from Brad.
Do you agree with Brad? How have you processed your own pain?

Young Girl with CF Improves After Her Pancreas Was Removed

Aug 29, 2019 05:04 am | Cystic Fibrosis News Moderator

Replies: 0
A girl with cystic fibrosis and acute recurrent pancreatitis experienced relief from her abdominal symptoms after her pancreas was removed, a report says. Read the full case study here.
What do you think of this story?

Legal Expert Explores the Ethics of Gene Editing

Aug 29, 2019 05:03 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read what a European legal expert, Timo Minssen, has to say about the ethical dilemmas raised by gene editing.
What do you think about this topic?

Gemma

Aug 28, 2019 08:58 am | Luisa Palazola

Replies: 0
Original post here
Hey guys! Today we have Gemma as our WCW! @gem.mcl is 24 years old and is from TX. This is what SHE considers important to her story with CF. ⁣⁣ ⁣⁣

I was diagnosed with CF at birth and was able to start treatments right away. My parents balanced teaching me about CF and allowing me to live a full life! I grew up taking river trips, camping, traveling, and exploring. I started doing theatre, writing, dancing, making art, and playing music from very early on. But, I became quiet about my illness. I didn’t want to be known for being sick, I wanted to be known for my singing, humor and art. I went on to attend @btwhspva.⁣⁣ ⁣⁣

In high school, I had serious mental health problems, as I was coping with CF and my father’s stage IV cancer. I struggled with self harm and suicidal thoughts. I am really glad to have made it out of that part of my life, but it became harder before it got easier. I overcame more than one traumatic sexual assault, and deal with PTSD daily. After my dad died and I survived a suicide attempt, I left home to start life over in college.⁣⁣ ⁣⁣

I began to heal with school and theatre. I met my amazing boyfriend, Eric, as well as friends that I’ll have forever. Once I started going to school and surrounding myself with people who loved me unconditionally, I started to heal. I started to love myself again and because of that, I started to really care about my health and take CF seriously. I have since traveled to Europe with my choir; cross-country with Eric; to LA to perform at @kcactf8. I’m really stoked to have gotten this far in my journey, and curious to see where it leads me.⁣⁣ ⁣⁣

CF takes its toll, but I have learned that CF can be embraced in many ways. In addition to my school-work and adventures, I’ve also taken singing lessons with @breathe_bravely and joined a virtual choir with others who have CF. I’ve been featured on @cfnewstoday, and on @thecut for an interview about @fivefeetapartfilm. I will work on the 1st musical about CF, @fallriskmusical! I’m also working with @vertexpharmaceuticals as a patient advocate. I’m grateful that despite sickness, there is an inspiring and diverse community.⁣⁣
⁣

Bacteria Common to CF Seen to Lose Antibiotic Resistance When Combined with Rhamnolipids

Aug 28, 2019 03:35 am | Cystic Fibrosis News Moderator

Replies: 0

A study suggests resistant S. aureus, a common CF bacteria, can be treated with tobramycin plus rhamnolipids, molecules that puncture bacterial membranes. Read more about it here.
What are your thoughts about this news?