Behind each of the 70,000+ cases of cystic fibrosis (CF) there is a person with a story to tell. Blogs have become a hugely popular platform on which to do so, allowing people with CF to share their experiences, insights, and emotions with one another. We have chosen seven categories relating to different aspects of life with CF, and one blog for each that we believe offer valuable insight.
Keep reading to find out which Cystic Fibrosis blog we recommend for:
Advocacy
Foster Care
Parenting
Family
Motivation
Mental health
Travel
Best CF Blog for Advocacy: Emily’s Entourage
Emily Kramer-Golinkoff co-founded Emily’s Entourage in 2011 with parents, Michael and Liza, and other friends and family members.
Emily’s form of cystic fibrosis, diagnosed when she was six weeks old, is caused by a rare nonsense mutation, meaning many of the breakthroughs in CF treatment over the years have proven ineffective for her.
Since the formation of Emily’s Entourage, the organization has raised over $3.7 million. The money is directed towards accelerating research and drug development for nonsense mutations – which account for roughly 5-10% of CF cases.
The blog dates back to the early days of the Entourage and is a collaborative effort of those involved in the foundation.
It documents the extensive fundraising efforts made over the years, as well as Emily’s prominent role as a patient advocate and speaker.
In 2015, Emily was named as one of the White House’s Champions of Change for precision medicine in recognition of her efforts, which have continued emphatically since then.
Her story has been featured far and wide, from TIME Health to CNN.
The blog is a great way to keep up with the wonderful work the Entourage performs, and the progress being made in the search for more effective treatments for CF – particularly in cases of nonsense mutations.
Best CF Blog for Foster Care: More Than DNA
Cheriz Kunkel knew from a young age that cystic fibrosis and other health issues would prevent her from ever becoming pregnant.
Instead, Cheriz and her husband, Andrew, have taken the route of becoming foster parents. Last year they took three children into their home, affectionately referred to as Cajun, a 13-year-old boy, Barbie, a 10-year-old girl, and Shoes, a two-and-a-half-year-old boy, on their blog and social media channels.
With More Than DNA, Cheriz and Andrew give readers a glimpse into their lives and the reality of juggling Cheriz’s CF treatment, work, being foster parents, and every other aspect of daily life.
The two eldest children, with whom Cheriz and Andrew maintain contact, have moved to options that better suit their needs.
Shoes, now three years old, is still with the couple, who keep readers up-to-date about his development and progress.
Whether to become a parent, and how to do so, is an issue many people with CF face. Like Cheriz, one may be unable to have a child naturally, while others are concerned about passing down the CF gene or the disease itself. Fostering, adoption, or surrogacy are therefore common alternatives.
Cheriz and Andrew’s blog and social media pages give a candid insight into the difficulties and challenges they have faced since deciding to foster children, as well as the fantastic gratification it entails.
Other posts you may be interested in on the MyTherapy blog:
- Living with an Invisible Illness: 6 People Share the Realities of Daily Life
- Ehlers-Danlos Syndrome: My Battle with a Rare Disease
Best CF Blog for Parenting: Inhaling Hope
It wasn’t until a year and a bit after its creation that Inhaling Hope became a blog about parenting, when its author’s daughter, Kaylee, entered the world.
That was in 2012, and the blog has been going strong ever since. The author opts to remain anonymous, so I will refer to her as CF Mom, a term she adorns to other mothers (and mothers-to-be) she has interviewed over the years – all of which are available in the blog archives.
CF Mom covers many aspects of her life with cystic fibrosis, from medication and exercise, to marriage and gardening. But it is the pregnancy and motherhood labels that have the greatest number of entries attached to them.
The early entries on the blog document CF Mom and her husband’s pre-pregnancy journey, the doctor’s appointments, and the unique obstacles those living with cystic fibrosis face.
CF Mom shared with readers the wonderful moment she announced her pregnancy to her husband, regular updates throughout the pregnancy and, to this day, the development of her daughter.
Her writing is open, engaging, and often emotional.
Anyone living with cystic fibrosis themselves, or has a partner who does, will be aware of the array of questions and complications that surround parenthood.
CF Mom has faced all of those issues and written about them openly, making Inhaling Hope a truly insightful blog.
Best CF Blog for Family: Westy Side Story
The Westy family is made of mother and wife, referred to online simply as C, husband and father, A, two growing boys, W (5 years old) and S (3), and a couple of rather adorable kittens named Franklin and Theodore.
Westy Side Story is written by C and it is her husband, A, who lives with cystic fibrosis.
The topic of having children is a notoriously complicated one for most people living with CF. As is usually the case in men with CF, assisted reproductive technology (ART) was required for the couple to have children biologically.
Once the couple learned that C was not a carrier – and thus the risk of their offspring inheriting CF was eliminated – they decided to use in-vitro fertilization (IVF).
The blog was started shortly after the birth of the couple’s first child. From there, C chronicles not only W’s development, but the entire IVF and pregnancy process prior to S’s birth.
The blog certainly does not focus on the fact that A lives with cystic fibrosis. In fact, you could read for a considerable length of time before coming across any mention of the condition.
However, while CF does not define the couple, it has undoubtedly shaped their experiences in starting a family through IVF. For couples in a similar situation to C and A, Westy Side Story will likely be a relevant and enlightening blog.
C is remarkably honest about her family’s experiences – both the good times and the bad – making Westy Side Story both captivating and poignant.
Best CF Blog for Motivation: Living Life Breathlessly
Alice Vogt, from Johannesburg, South Africa, says in her bio she has “cheated” CF and death by having two double lung transplants.
Alice’s first transplant was in 2008. From the beginning of 2013, her lung function began decreasing due to chronic rejection. In October 2017, her second transplant was performed and, as Alice puts it, CF was cheated once more.
Her blog, Living Life Breathlessly, dates back to 2007 before she had her first transplant and includes the occasional help from her family when she has been unable to update readers herself.
From the joy of learning new lungs have been found to the despair and frustration of rejection, Alice has faithfully kept the blog regardless of the direction the emotional pendulum is swinging. The highs and lows will be familiar to most people living with cystic fibrosis – or any number of chronic diseases, for that matter.
Alice has also clung to two obvious passions in her life – traveling and sport – with steely determination. Cystic fibrosis is not generally conducive to either, and Alice’s appreciation for life and her ability to continue doing both shines through in her writing.
She has competed in squash and walking at three World Transplant Games, winning a host of medals along the way, and hopes to qualify again in 2019.
The photo-laden blog also depicts her traveling exploits, which have taken her around her native continent of Africa and far beyond.
The entire blog depicts the highs and lows Alice has been through over the years. It is testament to her desire to continue doing the activities she loves, regardless of the adversity thrown her way.
Best CF Blog for Mental Health: CF Happens
Shannon Miller was diagnosed with cystic fibrosis at five months old.
In chapter 7 of the “book” she has published on her website, CF Happens, Shannon openly addresses the immense impact the condition has on one’s mental wellbeing.
“I went through a time when I was very depressed and had thoughts of ending it all,” she writes.
Depression is an ongoing battle for Shannon. It is a battle thousands of other people living with CF will be able to relate to, not to mention millions of other people – both with and without chronic diseases.
As she continues to juggle treatment for CF and depression, family life, fundraising, going through the procedures for a transplant, and plenty of other aspects of daily life, Shannon finds time to keep readers updated on her progress.
She does not sugar-coat the realities of life with CF and depression. Her blog is often highly emotional, and her words will no doubt resonate with many other people who can relate to the hugely important topics she discusses.
Best CF Blog for Travel: Continent Chasers
In case the name Continent Chasers was not a giveaway, the fact that Declan Houlihan and his wife, Paula, have visited 86 countries tells you something about what the couple’s shared passion in life is.
Declan was not diagnosed with cystic fibrosis until the age of 17. In the years that followed, his health did not pose too much of an issue and he was able to jet off for a year, traveling to Australia, New Zealand, Fiji, and other far-flung destinations.
Soon after that he met Paula, and the couple continued to travel extensively together. Large chunks of the Americas, Europe, and Asia have all been explored.
Continent Chasers is as much a travel blog as anything else, with plenty of information and tips for any budding backpacker or holiday-maker.
But it is for those living with cystic fibrosis that it really stands out from the crowd.
The couple have travelled to parts of the world where doctors are not even aware of cystic fibrosis. For people with CF wishing to travel, there are few people with more experience than Declan to offer advice.
The knowledge he and Paula have accumulated – and subsequently shared with the world online – is vast. The blog is where all this comes together and can be navigated by categories such as destination, food, or travel tips. There is also a section devoted to blogs specifically detailing life with cystic fibrosis.
For many people living with chronic conditions, travel can be as daunting as it is enticing. For those living with CF, there are few scenarios Declan and Paula are not familiar with, making Continent Chasers a worthwhile port of call in the search for tips, advice, and information.
Take a look at some of the other posts on the MyTherapy blog:
