April 6, 2017

Cystic Fibrosis (CF)

Here’s a free collection of resources about Cystic Fibrosis- blogs, support groups, first-hand experiences and advice from people who have Cystic Fibrosis, etc.

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Cystic Fibrosis Blogs

Here’s a collection of Cystic Fibrosis blogs. These blogs are written by people with Cystic Fibrosis or who have a relative with Cystic Fibrosis, or about Cystic Fibrosis.

***Email alexbalinski@gmail.com to submit your blog to this list.***

Breathe for Bea Foundation breatheforbea.org/blog 2018
One Breath At A Time kayla-onebreath.blogspot.com 2018
CF Community Blog cff.org/Blog 2018
CFLifeCare Blog cflifecare.com 2018
Claire’s Place Foundation clairesplacefoundation.org/blog 2018
Cystic Fibrosis Subreddit reddit.com/r/CysticFibrosis 2018
Emily’s Entourage Blog emilysentourage.org 2018
Cystic Life Blogs cysticlife.org 2018
CF Natural Health cfnaturalhealth.com 2018
CF Roundtable Blog cfroundtable.com/blog-2 2018
Inspiring Hope hopefulwithcf.blogspot.com 2018
The Living, Breathing Wendy thelivingbreathingwendy.com 2018
The Frey Life youtube.com/channel/..5KW7r7g 2018
Joyfully Breathing joyfullybreathing.wordpress.com 2018
Bright Hope bvbrighthope.wordpress.com 2018
CF Happens cfhappens.com 2018
TheraPink therapink.wordpress.com 2018
CF Stinks cfstinks.com 2018
Live, Laugh, Love, Breathe howilivelaughlovewithcf.blogspot.com 2018
Westy Side Story westysidestory.blogspot.com 2018
Tales Of Citrus And Salt teamddoes.blogspot.com 2018
CF With Grace cfwithgrace.com 2018
The Journey Of Faith heleadsus.wordpress.com 2018
Life In A Bubble Of Fun lifeinabubbleoffun.blogspot.com 2017
The Race Marked Out For Me theracemarkedoutforme.com 2018
On To New Windows ontonewwindows.blogspot.com 2018
Catboogie’s Dream catboogiesdream.blogspot.com 2018
Every Breath Means Hope everybreathmeanshope.blogspot.com 2018
Living Life Breathlessly livinglifebreathlessly.blogspot.com 2018
Her Legacy, My Life herlegacymylife.wordpress.com 2018
This Is Eli hithisiseli.com 2018
Gunnar Esiason gunnaresiason.com 2018
Breathe Bravely breathebravely.blogspot.com 2018
Cystic Fibrosis Canada cysticfibrosis.ca/blog 2018
Cystic Fibrosis News Today cysticfibrosisnewstoday.com 2018
Past The Point Of No Return tor-pastthepointofnoreturn.blogspot.com 2018
Suzanne Brandsen suzannebrandsen.wordpress.com 2018
Azers CF Website azerscfwebsite.com 2018
The Sprog’s Life thesprogslife.com 2018
Sabrina Walker sabrinawalkerfightscysticfibrosis.blogspot.com 2017
The Salty Cyster thesaltycyster.blogspot.com 2017
The Transplanted Dad transplanteddad.blogspot.com 2017
Jamie Bug jamiebug.blogspot.com 2017
Port, Pills and Parties portpillsandparties.blogspot.com 2017
Love to Breathe lovetobreathe.blogspot.com 2017
The Unknown Cystic unknowncystic.wordpress.com 2017
Northern CF Family northerncffamily.blogspot.com 2017
66 Roses 66roses.blogspot.com 2017
Illness Inspired Words illnessinspiredwords.blogspot.com 2017
The So What Life thesowhatlife.com 2017
Breath. Love. Justice breathlovejustice.blogspot.com 2017
Cystic Fibrosis Lifestyle Foundation cflf.org/blog 2017
Not So Bright And Shiny notsobrightandshiny.blogspot.com 2017
Hope In Focus flannelpluscoffee.wordpress.com 2017
Blue-Eyed Breather blue-eyedbreather.blogspot.com 2017
Emma Corr emmakatecorr.com 2017
Living and Breathing CF livingandbreathingcf.blogspot.com 2017
Cystic Fibrosis Blogroll cfblogroll.blogspot.com 2016
Sister Fibrosis sisterfibrosis.com 2016
Run, Sick Boy, Run runsickboyrun.blogspot.com 2016
My Life With CF ihavecf.blogspot.co.uk 2016
More Than DNA morethandna.org 2016
CF Wife cfwife.com 2016
Our CF Story ourcfstory.blogspot.com 2016
The Bold Bluebonnet boldbluebonnet.wordpress.com 2016
Just Breathing With CF justbreathingwithcf.blogspot.com 2016
The CF Diet thecfdiet.blogspot.com 2016
Cystic Fibrosis Mom cysticfibrosismom.com 2016
Judith’s Crusade judithscrusade.blogspot.com 2016
On Eagles Wings Forever oneagleswings4ever.blogspot.com 2016
Breath To Blog breathtoblog.blogspot.com 2016
Love Your Life loveyourlife1blog.wordpress.com 2016
2nd Chance At Life? kirstie-2ndchanceatlife.blogspot.com 2016
My CF Journey mycfjourney.blogspot.com 2016
Cystic Fibrosis: Hope & Health cysticfibrosisblog.blogspot.com 2016
Cystic Fibrosis Fatboy cffatboy.com 2016
Breathing Beautifully breathingbeautifully.wordpress.com 2016
CF Kitchen cfkitchen.wordpress.com 2016
Remember To Breathe remembertobreatheceh.blogspot.com 2016
My Life As A Mom With CF cfpgjourney.blogspot.com 2016
Bella’s Blog bellace85.wordpress.com 2016
Mini Mauk minimauk.blogspot.com 2016
Becoming Found becomingfound.blogspot.com 2016
Elena CF Update elenacfupdate.blogspot.com 2016
Puff, Puff, Live puffpufflive.wordpress.com 2015
Live, Laugh, Lungs livelaughlungs.blogspot.ca 2015
Hannah Breathes hannahbreathes.blogspot.com 2015
A Cyster’s Story rachelmroy.blogspot.com 2015
Chelsea Baker 65rosesandtheyallhavethorns.blogspot.com 2015
Welcome to Joshland welcometojoshland.com 2015
Being Pregnant With Cystic Fibrosis thechronicallyfabulousmom.blogspot.com 2015
Fight For Roses flyingpenguin20.wordpress.com 2015
Living My Dreams With CF livingmydreamswithcf.blogspot.com 2015
Heading For Home headingfortoddhome.blogspot.com 2015
Rebecca Mia dailychroniclesofcysticfibrosis.blogspot.com 2015
Glue Meets Paper gluemeetspaper.blogspot.com 2015
Scrapping For A Cure scrappingforacure.blogspot.com 2015
Breathe In. Breathe Out. Repeat. breathe-in-breathe-out-repeat.blogspot.com 2015
Lungs Behaving Badly lungsbehavingbadly.blogspot.com 2015
Julie Jean littleluellen1985.blogspot.com 2015
My Lung Transplant Journey mylungtransplant.blogspot.com 2015
Sassy Castle sassycastle.blogspot.com 2015
Breathing’s My Fev1orite breathingsmyfev1orite.wordpress.com 2015
A Matter Of Life And Breath amatteroflifeandbreath.blogspot.com 2015
Our Cystic Fibrosis Life ourcysticfibrosislife.blogspot.com 2015
Two Salty Boys twosaltyboys.blogspot.com 2015
Felix and Victor felixandvictor.blogspot.com 2015
Lucky CF Mom luckycfmom.blogspot.com 2015
Holy Rosanna hollyrosanna.blogspot.com 2015
Andy Lipman thedriveat35.blogspot.com 2015
Katie-Marie Gammon misskmgammon.blogspot.com 2015
Spit It Out! spititoutblogspot.com 2015
My Life With Jack elizabethwclark.blogspot.com 2014
Christine Soderborg christinesoderborg.blogspot.com 2014
Confessions Of A Cyster confessionscyster.blogspot.com 2014
Lydia fighttolivelivetofightcf.wordpress.com 2014
Fight 2 Inhale fight2inhale.blogspot.com 2014
Confessions Of A CF Husband cfhusband.blogspot.com 2014
The Murray Home themurrayhome.blogspot.com 2014
My Roaring Twenties justsomethinglikeit.blogspot.com 2014
Not Enough Oxygen notenoughoxygen.blogspot.com 2013
Inhale Love, Exhale Hate briannelh.blogspot.com 2013
Definitely, Maybe def-maybe.blogspot.com 2013
The CF Climb thecfclimb.blogspot.com 2013
Laughter Is The Best Medicine laughingmedicine91.blogspot.com 2013
A Salty Sweet Life asaltysweetlife.blogspot.com 2013
No Excuses noexcusesnoexcuses.blogspot.com 2013
Miracles Happen emileepehrson.blogspot.com 2013
Cyster, ProFessler cysterprofessler.blogspot.com 2013
My CF Blog marcicfblog.blogspot.com 2013
Moggy Mushroom moggymushroom.blogspot.com 2012
A Breath Of Fresh Air abreathoffreshair-ekg.blogspot.com 2012
A Cyster’s Life beeschislifeandlungs.blogspot.com 2012
Moganko For CF mogankoforcf.org 2012
Within Deep Brown Eyes withindeepbrowneyes.blogspot.com 2012
Ashlee and Jordin’s Angels jordinlyn.blogspot.com 2011
Understanding Cystic Fibrosis understandingcysticfibrosis.blogspot.com 2008

Cystic Fibrosis Support Groups

Cystic Fibrosis Support Groups On Facebook

  1. Cystic Fibrosis Facebook Group (23,705 members)
  2. OutRUN The Odds Group (6,207 members)
  3. DearCF Group (4,520 members)
  4. CF Society Group (4,053 members)
  5. CF Mamas Group (3,883 members)
  6. Cystic Fibrosis II Group (3,596 members)
  7. CF Parents Group (3,345 members)
  8. CF Connect Group (3,287 members)
  9. Help Me Breathe, Help Them Grieve (Cystic Fibrosis & Organ Donors) Group (2,982 members)
  10. Cystic Fibrosis Memes Group (2,695 members)
  11. CFAware Chat Group (2,601 members)
  12. Cystic Fibrosis Awareness Jewelry & More Group (2,254 members)
  13. Parenting Cystic Fibrosis Children Naturally Group (1,629 members)
  14. Just Breathe – A 100% Support Group for Cystic Fibrosis Group (1,534 members)
  15. CF Survivors Families & Friends Support Group<3 (1,439 members)
  16. CF Meds for Australians Group (1,430 members)
  17. Cystic Fibrosis Research News Group (1,372 members)
  18. CF Chat World Wide Group (1,142 members)
  19. More Than Just Me Foundation Group (1,107 members)
  20. Lung Transplant Recipients Group (1,060 members)
  21. CF Group (929 members)
  22. Cystic Fibrosis Disability CF SSI SSA SSDI Group (871 members)
  23. Pay it Forward…Cystic Fibrosis Site..Group (856 members)
  24. CF Gang (Cystic Fibrosis) Group (847 members)
  25. Our CF family Group (798 members)
  26. Running for Cystic Fibrosis Group (784 members)
  27. Team CF Runners – Cystic Fibrosis Trust Group (771 members)
  28. CF Research News Australia Group (673 members)
  29. Team Cystic Fibrosis Group (509 members)
  30. CF Moms Group (446 members)
  31. Cystic Fibrosis Support & Advice Group – Australia Group (426 members)
  32. CF in Utah Group (327 members)
  33. Cystic Fibrosis UK Support Group (296 members)
  34. Cystic Fibrosis Supporters Group (284 members)
  35. CF Mamas Canada Group (282 members)
  36. Why We Are Supporting The Cystic Fibrosis Trust Group (248 members)
  37. Cystic Fibrosis Support Group (233 members)
  38. Cystic Fibrosis Awareness Group (201 members)
  39. Families with cystic fibrosis children Group (198 members)
  40. Cystic Fibrosis- UK and Ireland CFers Only Group (198 members)
  41. Cystic Fibrosis and Breast Cancer Awareness fundraising group (192 members)
  42. Cystic Fibrosis Lung Transplant Group (183 members)
  43. Cystic Fibrosis Sponsors Group (182 members)
  44. Cystic Fibrosis charity match Group (177 members)
  45. CF Wives Group (175 members)
  46. Cystic Fibrosis Support Group (175 members)
  47. Cystic Fibrosis Cookbook Fundraiser Group (173 members)
  48. CF friends Group (166 members)
  49. Support CF (cystic fibrosis) Research! Group (163 members)
  50. Cystic Fibrosis Awareness! Group (159 members)
  51. Team Kindi Cystic Fibrosis Awareness Group (154 members)
  52. Wythenshawe Hospital Cystic Fibrosis Group (152 members)
  53. Ole Miss Cystic Fibrosis Awareness Group (139 members)
  54. Cystic Fibrosis support for Dads Group (138 members)
  55. Cystic Fibrosis Support (CF) Group (134 members)
  56. Breathe & Believe Group (132 members)
  57. ❤ Fundraising & Awareness for Cystic Fibrosis ❤ Group (124 members)
  58. Auctions for Cystic Fibrosis Group (123 members)
  59. BREATHE. Fundraiser for Cystic Fibrosis Group (122 members)
  60. CF Cycle for Life – Pittsburgh Group (122 members)
  61. Cystic Fibrosis Fundraiser Group (112 members)
  62. Totes For Cystic Fibrosis  Group (112 members)
  63. Fight Cystic Fibrosis Group (104 members)
  64. Striding to Cure CF (cystic fibrosis) Group (104 members)
  65. Cystic Fibrosis Group For Young People Group (103 members)
  66. LDS and CF Group (101 members)
  67. Cystic Fibrosis CF Group (94 members)
  68. Cystic Fibrosis Group (93 members)
  69. Cystic Fibrosis”LEAN ON ME” Group (92 members)
  70. Cystic Fibrosis Fighters [CFF] Group (90 members)
  71. Cystic Fibrosis (CF) Group (84 members)
  72. Support Cystic Fibrosis Group (77 members)
  73. Cystic Fibrosis-Alternative Group (74 members)
  74. Women with Cystic Fibrosis Group (72 members)
  75. College and Cystic Fibrosis – CF Group (65 members)
  76. My Child Has CF (Cystic Fibrosis) Group (61 members)
  77. Cystic Fibrosis and your point of view Group (58 members)
  78. CF Dads Group (52 members)
  79. Adult CF Champions In Utah Group (50 members)
  80. Cystic Fibrosis Related Diabetes Group (33 members)
  81. Cystic Fibrosis Mommies Group (31 members)
  82. Cystic Fibrosis Uk Group (31 members)
  83. Cystic Fibrosis Facts and Information Group (29 members)
  84. Cystic Fibrosis Family Care Group (28 members)
  85. Support Cystic Fibrosis 🙂 Group (25 members)

Google Plus Cystic Fibrosis Support Communities

  1. Home Remedies For Chest Congestion Community (520 members)
  2. Cystic Fibrosis Community (278 members)
  3. Moms of Kids With Cystic Fibrosis Community (91 members)
  4. Cure CF Now Community (88 members)
  5. CF Awareness Community (60 members)

Other Cystic Fibrosis Support Groups And Forums

  1. Cystic Fibrosis Support Group (15,102 members, 1,109 posts)
  2. CysticLife.org’s Support Group (8,733 members)
  3. CF2Chat.com Forum (8.573 members, 42,068 posts)
  4. Reddit.com Cystic Fibrosis Subreddit (1,161 members)
  5. Cystic Fibrosis Trust Forum (505 members, 1,577 posts)
  6. Inspire.com’s Cystic Fibrosis Support Group and Discussion Community (142 members)
  7. Cystic Fibrosis Support Group (27 members, 550 posts)
  8. Drugs.com Cystic Fibrosis Support Group (27 members, 28 questions)
  9. eHealthForum.com’s Cystic Fibrosis Forum
  10. Cystic Fibrosis Message Board
  11. HealingWell.com Cystic Fibrosis Forum
  12. CysticFibrosis.com Forums
  13. MDJunction Cystic Fibrosis Support Group

Local Chapters In The United States

*Browse The Cystic Fibrosis Foundation’s 70 Chapter/Branch Locations.

Cystic Fibrosis Survey

We are surveying  people about their experiences with Cystic Fibrosis. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)

**Click here to share your experience with Cystic Fibrosis**

Cystic Fibrosis Gene Mutations

Genetic mutations found:

  • DF508. (Tilly, 8 years old)
  • G511D 508. (Callum, 9 years old)
  • G551D. (Peter, 17 years old)
  • Delta F508. (Alyssa, 17 years old)
  • DD508. (Elisabeth, 18 years old)
  • Df507, Df508. (Chelsey, 20 years old)
  • F508 and other small mutation. (Ashlye, 20 years old)
  • ddf508. (Cody, 22 years old)
  • Very rare. (Lisa, 24 years old)
  • Delta 508. (Alison, 37 years old)
  • D508. (Fayla, 40 years)
  • D508 both sides. (Cindy, 41 years old)
  • F508, G551D. (Edward, 44 years old)
  • DF508, T5. (Jane A., 49 years old)
  • G551D and Df508. (Helen F., Knows 1 year old with CF)
  • dd508 and G542x. ( Barbara P., Mother of child w/CF)
  • Double f508del. (Melinda, Mother of 2.5 year old w/CF)
  • Delta f508, I1398S. (Amber, Mother of 4 year old w/CF)
  • Df508 Mv1. (Margaret M., Mother of 16 & 26 year olds w/CF)
  • Del del f508. (Tessa, Mother of 15 month old girl w/CF)
  • Double Df508. (Paige, Mother of 1 year old girl w/CF)
  • R560T, df508. (Cinda, Mother of 3 year old girl w/CF)
  • dd508. (Janelle, 2 year old grandson w/CF)
  • DF508/R117H. (Wendy, Mother of 6 year old w/CF)
  • Very rare. (Lisa S., Mother of 24 year old son w/CF)
  • S1235r, other. (Kerri, Mother of 4 children w/CF)
  • DDF508. (Suzanne L., Mother of 26 year old daughter w/CF)

Cystic Fibrosis Symptoms

What symptoms have you (or your loved one) experienced?

  • Pancreatic insufficiency, failure to thrive, also has Type 1 diabetes. (Tilly, 8 years old)
  • Mainly coughing. (Callum, 9 years old)
  • Coughing. (Peter, 17 years old)
  • Chest tightness, cough, nausea, headaches, sinus pressure, etc. (Alyssa, 17 years old)
  • Cough, shortness of breath, weight loss, lung infections. (Elisabeth, 18 years old)
  • Sinus congestion/sinus infections, minor lung issues. (Chelsey, 20 years old)
  • Chronic bronchitis, pneumonia, sinusitis, fragile bones, low immune system, pale, low energy. (Ashlye, 20 years old)
  • Every symptom possible. (Cody, 22 years old)
  • Can’t breath on oxygen 24/7. (Lisa, 24 years old)
  • Digestive primarily. (Alison, 37 years old)
  • Sinuses and gut are involved. (Fayla, 40 years old)
  • Sinusitis. Meuconeus +Illeus. Lung infections. (Cindy, 41 years old)
  • Lowest lung function ever at 26%, digestive issues, shortness of breath. (Lori, 43 years old)
  • Respiratory, chronic pneumonia, digestive issues including bowel obstructions, CFRD. (Jane A., 49 years old)
  • Pancreatic insufficient but nothing else so far, as only just turned one year old. (Helen F., Knows 1 year old with CF)
  • He experiences stomach aches, headaches, coughs. (Clare, Knows Someone With CF)
  • The list is too long to list. Here are some. Lung infections, kidney stones, constant nausea, almost constant coughing, sometimes coughing up blood. These are just a few. (Mary Ann, Granddaughter w/CF)
  • I have witnessed constant coughing, weight loss, Pulmonary distress, blood in sputum, liver problems, mental health issues with depression, dietary issues, gallbladder issues, the list goes on and on…between two children with CF , the issues are on going. (Cynthia D., Children w/CF ages 18 and 27)
  • Lung exacerbations, stomach digestion issues, cirrhosis, fatty liver. (Barbara, Mother of child w/CF)
  • Meconium ileus at birth, surgically corrected; bowel resection due to scar tissue from first surgery; difficulty gaining weight. (Melinda, Mother of 2.5 year old w/CF)
  • Lung infection and stomach trouble. (Amber, Mother of 4 year old w/CF)
  • Lung digestive CFRD, Liverpool disease. (Margaret M., Mother of 16 & 26 year olds w/CF)
  • Severely pancreatic insufficient, minor lung scarring. (Tessa, Mother of 15 month old girl w/CF)
  • Pancreatic enzyme insufficiency, occasional coughing. (Paige, Mother of 1 year old girl w/CF)
  • Appetite and weight gain issues. Getting a gtube. Antibiotics often needed to get over illnesses. (Cinda, Mother of 3 year old girl w/CF)
  • Mild asthma, sweating salt. (Wendy, Mother of 6 year old w/CF)
  • Can’t breath on oxygen 24/7. (Lisa S., Mother of 24 year old son w/CF)
  • Mostly GI, one case of pseudo-fought for a year. (Kerri, Mother of 4 children w/CF)
  • Cough, lung infections, GI problems. (Summer, Mother of 11 year old son w/CF)

Cystic Fibrosis Interesting Facts

What are some interesting facts you’ve learned about Cystic Fibrosis?

  • CF doesn’t have to define your life. (Tilly, 8 years old)
  • It makes my hands get extra wrinkly quickly when I spend time in the water. (Alyssa, 17 years old)
  • I didn’t know that a lot of people with CF have clubbed fingers. I don’t, so I thought that was really interesting. (Chelsey, 20 years old)
  • In my case I only have one gene and small mutation of CF. However, I suffer from almost all of the CF symptoms. (Ashlye, 20 years old)
  • Nothing, it’s an awful disease. (Cody, 22 years old)
  • How young people die. (Lisa, 24 years old)
  • You can have more than one mutation. (Alison, 37 years old)
  • CF’ers are VERY STRONG PHYSICALLY and emotionally. It’s difficult to let people see me cry. (Fayla, 40 years old)
  • Most females get bladder leakage. (Cindy, 41 years old)
  • Each CF patient manifests symptoms in different ways ( no two patients are alike). (Lori, 43 years old)
  • The general public, even healthcare providers lack of knowledge & understanding of CF. (Jane A., 49 years old)
  • Everyone is individual, no two CF patients with the same mutations will have the exact same problems. (Helen F., Knows 1 year old with CF)
  • Salty skin. (Clare, Knows Someone With CF)
  • Over the years, how truly horrible this disease is. (Mary Ann, Granddaughter w/CF)
  • As a parent of two children with CF, people are living longer. (Cynthia D., Children w/CF ages 18 and 27)
  • No two are alike. (Barbara, Mother of child w/CF)
  • That some mutations may make people immune to some communicable diseases. I also find the effect on fertility very interesting. (Melinda, Mother of 2.5 year old w/CF)
  • Drugs in pipeline, how others manage and nutritional information. (Margaret M., Mother of 16 & 26 year olds w/CF)
  • That every case and every patient is so different! Some are PI, some are PS, some have terrible lung infections, some have none! (Paige, Mother of 1 year old girl w/CF)
  • Too many to list. I’m fascinated and discouraged by the fact that each mutation affects the CFTR in a different way. It’s such a complex disease. (Cinda, Mother of 3 year old girl w/CF)
  • Health gems. (Janelle, 2 year old grandson w/CF)
  • How young people die. (Lisa S., Mother of 24 year old son w/CF)
  • Everyone is different. (Kerri, Mother of 4 children w/CF)
  • It affects every patient differently. (Summer, Mother of 11 year old son w/CF)

Cystic Fibrosis Pain Relief

What are effective ways to relieve your (or your loved one’s) pain?

  • Deep breathing. Exercise. (Peter, 17 years old)
  • Distractions!!!! Movies, hot or cold packs, and of course a good blanket and pillow combo! (Alyssa, 17 years old)
  • Ibuprofen, Tylenol, Aleve, etc. (Chelsey, 20 years old)
  • There’s not an effective way to relieve my pain. (Cody, 22 years old)
  • Massages, hot tub. (Fayla, 40 years old)
  • Anti-inflammatories. Naturopath helps. (Cindy, 41 years old)
  • Talking about what’s going on, so I’m not suffering alone. (Lori, 43 years old)
  • Rest, hot bath or shower, yoga helps a lot too. (Jane A., 49 years old)
  • Be there for them, entertain them, help with every day life. (Mary Ann, Granddaughter w/CF)
  • Depends on situation. (Cynthia D., Children w/CF ages 18 and 27)
  • Pills, warm baths, foot massage. (Barbara P., Mother of child w/CF)
  • Not many. (Margaret M, Mother of 16 & 26 year olds w/CF)
  • To know that we are trying to find a cure. (Janelle, 2 year old grandson w/CF)
  • There isn’t. (Lisa S., Mother of 24 year old son w/CF)
  • Talk about fun times ahead or fun times you have had. (Summer, Mother of 11 year old son w/CF)
  • Physical pain…for her, increase oxygen flow and limit movement to help with breathing. Give pain medication for headaches and body pain. Emotional pain…talk with her about her concerns and worries. (Suzanne L., Mother of 26 year old daughter w/CF)

Cystic Fibrosis Difficulties

What are the most difficult aspects of living with Cystic Fibrosis?

  • Treatment. (Tilly, 8 years old)
  • Treatments. (Callum, 9 years old)
  • Shortness of breath during heavy exercise sometimes. (Peter, 17 years old)
  • The fact that we, as CFers, can’t communicate easily, so we feel alone. (Alyssa, 17 years old)
  • Trying to enjoy a normal life. (Elisabeth, 18 years old)
  • Seeing the way if affects my family. Medical bills put a lot of stress on my husband, and I feel bad that a lot of the money he works so hard for goes to keeping me healthy. (Chelsey, 20 years old)
  • Managing my CF life and work life. As a preschool teacher it’s hard to balance it all. (Ashlye, 20 years old)
  • Not being able to breathe, knowing I’m going to die young. (Cody, 22 years old)
  • Limited to what I can do. (Lisa, 24 years old)
  • Treatments. (Alison, 37 years old)
  • The dad in/day out routine. CF never goes away. (Fayla, 40 years old)
  • Coughing. (Cindy, 41 years old)
  • My body can’t do what my mind yearns to. (Lori, 43 years old)
  • When new CF parents tell a 44 year old man what he needs to do for his cystic fibrosis. (Edward, 44 years old)
  • Having to stay away from family & friends when they’re sick or I am. (Jane A., 49 years old)
  • Physio. (Helen F., Knows 1 year old with CF)
  • Anxiety/depression. (Clare, Knows Someone With CF)
  • Seeing my granddaughter in so much pain and being helpless. (Mary Ann, Granddaughter w/CF)
  • Living a normal life and it’s expectations. (Cynthia D., Children w/CF ages 18 and 27)
  • Chronic lack of air. (Barbara P., Mother of child w/CF)
  • Time and money. (Melinda, Mother of 2.5 year old w/CF)
  • Coping with the symptoms and fear of the future. (Amber, Mother of 4 year old w/CF)
  • 26 YR old: CFRD and Liver Disease. 16 yrs old: weight gain, lungs and digestive. (Margaret M., Mother of 16 & 26 year olds w/CF)
  • Trying to get her to gain weight. And knowing that her life may be cut short because of this disease. (Tessa, Mother of 15 month old girl w/CF)
  • Anxiety of germ prevention, isolation, time consuming treatments and medications. (Paige, Mother of 1 year old girl w/CF)
  • Worry, constant need to keep on top of everything, time, ‘making’ my daughter spend so much of her day doing treatments (we’re on 4x right now), and worry. 😊 (Cinda, Mother of 3 year old girl w/CF)
  • Lots of drugs, time for treatment, money, mother can’t go back to work. (Janelle, 2 year old grandson w/CF)
  • The treatment time and the things that they miss out on. (Wendy, Mother of 6 year old w/CF)
  • Being limited to what I can do. (Lisa S., Mother of 24 year old son w/CF)
  • Concerns about the future, daily preventative treatments. (Kerri, Mother of 4 children w/CF)
  • Scheduling everything in, once you get it down, the next week things change and you’re trying to figure out how to fit everything in again. (Summer, Mother of 11 year old son w/CF)
  • The roller coaster of being well one day and sick the next. (Suzanne L., Mother of 26 year old daughter w/CF)

Cystic Fibrosis Advice

What words of encouragement/advice can you share with others who have Cystic Fibrosis?

  • Keep going, you’ve got a long way to go, and you may be going slow, but at least you haven’t stopped moving. (Peter, 17 years old)
  • You have the ability to do more than you will ever know! Take it one day at a time. (Alyssa, 17 years old)
  • CF makes us stronger. We can do anything we set our minds to. (Elisabeth, 18 years old)
  • Enjoy life. Love the people around you, do what you can to stay healthy. 🙂 Have fun! (Chelsey, 20 years old)
  • It’s okay if all you did today was just breath. (Ashlye, 20 years old)
  • Live your life. (Cody, 22 years old)
  • Never give up. (Lisa, 24 years old)
  • YOU CAN BE BETTER than this illness, HARNESS your inner strength. (Alison, 37 years old)
  • Keep smiling! (Fayla, 40 years old)
  • You can have an amazing life, and you’ll learn more about life than most people will ever know in a shorter time. CF’s have a wicked outlook. Wake up breathing, winning. (Cindy, 41 years old)
  • Don’t let CF stop you from doing what you love.. (Lori, 43 years old)
  • Don’t give up your dreams. You may have to alter them based on how your health is, but don’t ever give up. You can still do whatever you want!!! (Jane A., 49 years old)
  • Medication is changing all the time, and life expectancy is increasing every year. (Helen F., Knows 1 year old with CF)
  • Get on with life, don’t use it as an excuse not to try something. (Clare, Knows Someone With CF)
  • You know your body, stay active. (Mary Ann, Granddaughter w/CF)
  • Don’t ever give up…someone loves you very much. (Cynthia D., Children w/CF ages 18 and 27)
  • Have a support team. (Barbara P., Mother of child w/CF)
  • Understand your reality, but choose to find the positive and don’t let this one thing hold you back from anything. Embrace being different and celebrate it, and all the other things that make you special. (Melinda, Mother of 2.5 year old w/CF)
  • Keep going with everything you have in you. (Amber, Mother of 4 year old w/CF)
  • The harder we work, the sooner a cure will be found. Look how far we have come. (Margaret M., Mother of 16 & 26 year olds w/CF)
  • Some days are long but know you are doing your best and it will all be ok. (Paige, Mother of 1 year old girl w/CF)
  • Though it must often feel like it because CF is such an isolating disease, they are not alone. (Cinda, Mother of 3 year old girl w/CF)
  • To know that we will find a cure. (Janelle, 2 year old grandson w/CF)
  • Your parents love you and want what’s best for you. (Wendy, Mother of 6 year old w/CF)
  • Never give up. (Lisa S., Mother of 24 year old son w/CF)
  • Hang in there. Find something every day to smile about. Be compliant. (Kerri, Mother of 4 children w/CF)
  • Play, breathe, repeat. (Summer, Mother of 11 year old son w/CF)
  • Early diagnosis and improvement in healthcare has given survival rate a boost…use what you have to the best to stay healthy. (Suzanne L., Mother of 26 year old daughter w/CF)

Cystic Fibrosis Diet and Exercise

What’s been your (or your loved one’s) experience with diet and exercise?

  • Difficult to maintain or gain weight. (Tilly, 8 years old)
  • Struggles with food, loves exercise. (Callum, 9 years old)
  • Eat a lot and work out like a beast. (Peter, 17 years old)
  • Diet is not too hard unless I have no appetite. Exercise was hard until I found the right type of exercise for me. (Alyssa, 17 years old)
  • Exercise tends to help my lung function stay up. (Elisabeth, 18 years old)
  • I did drill team throughout high school. Now I do Beachbody-Shakeology and their PiYo program, and I feel so great! (Chelsey, 20 years old)
  • I try to eat healthy, lots of juices and vitamin C, but it doesn’t really make a difference. Exercise is hard on my lungs, so I do a lot of walking. (Ashlye, 20 years old)
  • Poor. (Cody, 22 years old)
  • Eats a lot and exercises. (Lisa, 24 years old)
  • Lots of healthy eating, running, swimming and weight training. (Alison, 37 years old)
  • I eat whatever I want and have zero exercise in place. (Fayla, 40 years old)
  • Healthy diet + Plenty of exercise + Less work = Better health. (Cindy, 41 years old)
  • Exercise is a must. (Lori, 43 years old)
  • Exercise makes a difference; diet is a struggle at times, but you need to listen to your body. (Jane A., 49 years old)
  • All good so far. (Helen F., Knows 1 year old with CF)
  • It helps tremendously. (Barbara P., Mother of child w/CF)
  • Our little one has been on a very high calorie diet since day one, and she is active due to her age. (Melinda, Mother of 2.5 year old w/CF)
  • Gaining weight. (Amber, Mother of 4 year old w/CF)
  • Diet is difficult, exercise is very basic. (Margaret M., Mother of 16 & 26 year olds w/CF)
  • Ugh… Diet. I hate that word. Getting her to gain weight is the worst thing I have ever experienced. (Tessa, Mother of 15 month old girl w/CF)
  • Limited, but so far so good, high fat, high protein. Just entering the exercise world. (Paige, Mother of 1 year old girl w/CF)
  • My daughter will not touch fruits or veggies. We are always trying desperately to get more fat and calories in her, and her choices aren’t always the healthiest. It’s a constant battle in my mind. (Cinda, Mother of 3 year old girl w/CF)
  • It’s very hard just to be able to grab a glass of tap water, not on. (Janelle, 2 year old grandson w/CF)
  • He’s not on a special diet and he plays and exercises like all my other kids. (Wendy, Mother of 6 year old w/CF)
  • He eats a lot and exercises. (Lisa S., Mother of 24 year old son w/CF)
  • Healthy diet is best. Exercise is a must. (Kerri, Mother of 4 children w/CF)
  • We power packed calories at first and now we are over weight and are watching our calories. It’s been hard to get him out to exercise, but we have found he loves to swim and be on his bike. (Summer, Mother of 11 year old son w/CF)
  • All goes well when ‘well’ and when sick it takes too much energy for her to bother with. Then I turn into a ‘nag’. (Suzanne L., Mother of 26 year old daughter w/CF)

Cystic Fibrosis Treatments

What’s been your (or your loved one’s) experience with treatments (drugs, self-care, transplants, etc.)?

  • It’s difficult to manage. (Tilly, 8 years old)
  • Does not like hypertonic saline. (Callum, 9 years old)
  • Take the tablets. Not be sick. (Peter, 17 years old)
  • Self care gets hard often. Most drugs come with bad side effects that aren’t worth the benefit. (Alyssa, 17 years old)
  • It’s saved my life. (Elisabeth, 18 years old)
  • Honestly, I do better just exercising and eating healthy. None of the treatments have ever really helped. I do IV antibiotics every couple of years, but that’s about it. (Chelsey, 20 years old)
  • Lots of antibiotics: IV antibiotics seem to work a lot better. (Ashlye, 20 years old)
  • Bad in Birmingham, Alabama at UAB. (Cody, 22 years old)
  • Lost him during transplant. (Lisa, 24 years old)
  • Natural health foods, lot’s of exercise reduces hospital visits. I was never admitted until I was 24 years old, when I stopped doing organized/school sports. (Alison, 37 years old)
  • I do self care 99.99% of the time. (Fayla, 40 years old)
  • More allergies as I get older. No transplant required yet. Noticing clubbing, etc. now. (Cindy, 41 years old)
  • I had a double lung txp over 7 years ago & it’s been amazing. Before the txp I had been on 5 breathing treatments a day, O2 for over 2 years, many pills, became resistant to almost all antibiotics…it was really hard day to day. (Jane A., 49 years old)
  • Hard to give medication to such a young child. (Helen F., Knows 1 year old with CF)
  • Kalydeco has been great, and now he doesn’t need anything apart from enzymes. (Clare, Knows Someone With CF)
  • Different things work for different children, even with same mutation. (Barbara P., Mother of child w/CF)
  • So far she does the basics, we have not done any trials and we are responsible for all of her care because she is so young. (Melinda, Mother of 2.5 year old w/CF)
  • Compliance is difficult. (Margaret M., Mother of 16 & 26 year olds w/CF)
  • She does treatments very well. (Tessa, Mother of 15 month old girl w/CF)
  • Good, my daughter tolerates treatments and meds well with the occasional rebellious stage, but that is easily worked through. Patience is key. (Paige, Mother of 1 year old girl w/CF)
  • We are on preventative/maintenance meds and treatments. She has not cultured anything nasty yet. (Cinda, Mother of 3 year old girl w/CF)
  • Lots of experience. (Janelle, 2 year old grandson w/CF)
  • Just that they take a lot of time. (Wendy, Mother of 6 year old w/CF)
  • Lost him during transplant. (Lisa S., Mother of 24 year old son w/CF)
  • Not much known in the CF community about helps for GI issues, but nebs and percussion treatments really help, as well as some holistic remedies. (Kerri, Mother of 4 children w/CF)
  • Miralax is his friend and do your treatments (all of them). (Summer, Mother of 11 year old son w/CF)
  • She embraces anything new, but gets frustrated that through resources and living in a third world country there are limited treatments available. (Suzanne L., Mother of 26 year old daughter w/CF)

Cystic Fibrosis Recommendations

Anything you would recommend for someone with Cystic Fibrosis?

  • Never give up, it’s a fight that will never end, make sure you never stop punching. (Tilly, 8 years old)
  • Do treatments daily. (Callum, 9 years old)
  • Keep fit- do cardio in particular. Avoid smokers. (Peter, 17 years old)
  • Remember that when it is hard, it doesn’t mean you can’t be happy! (Alyssa, 17 years old)
  • Keep fighting and do all your meds/treatments. (Elisabeth, 18 years old)
  • The doctor doesn’t always know what’s best. Numbers don’t tell everything… the way you feel is much more important than the numbers. (Chelsey, 20 years old)
  • Just keep breathing! (Ashlye, 20 years old)
  • Do all of your medicines, take care of yourself. (Cody, 22 years old)
  • Do everything your told. (Lisa, 24 years old)
  • Listen to your body, don’t go by what others say, every case is unique just like you. (Alison, 37 years old)
  • Stay positive, even on the days you’re hurting. (Fayla, 40 years old)
  • Exercise your little legs off. (Cindy, 41 years old)
  • Do your treatments…No, really-DO THEM!!! (Lori, 43 years old)
  • Share your story; talk to other CFers…best source of knowledge & support are those who know what it’s like. (Jane A., 49 years old)
  • Take each day as it comes, and don’t read too much into the history of it online. (Helen F., Knows 1 year old with CF)
  • Stay at school, stay in as many normal activities as possible. (Clare, Knows Someone With CF)
  • Treatments, treatments, and more treatments. (Mary Ann, Granddaughter w/CF)
  • Be compliant with your treatment plan. (Cynthia D., Children w/CF ages 18 and 27)
  • Keep an open mind. (Barbara P., Mother of child w/CF)
  • Keep hope. (Amber, Mother of 4 year old w/CF)
  • More support on emotional levels, maybe more social connection. (Margaret M., Mother of 16 & 26 year olds w/CF)
  • Have fun and live life to the fullest. (Tessa, Mother of 15 month old girl w/CF)
  • No, I’m still pretty inexperienced to give recommendations. (Paige, Mother of 1 year old girl w/CF)
  • Be compliant. (Cinda, Mother of 3 year old girl w/CF)
  • To make sure they do their Physio. (Janelle, 2 year old grandson w/CF)
  • I don’t have CF, so I can’t really make any recommendations. (Wendy, Mother of 6 year old w/CF)
  • Do everything your told. (Lisa S., Mother of 24 year old son w/CF)
  • A support group. (Kerri, Mother of 4 children w/CF)
  • Just because today is great, don’t skip your treatments. (Summer, Mother of 11 year old son w/CF)
  • Work at it and stay vigilant every day to stay healthy. (Suzanne L., Mother of 26 year old daughter w/CF)

Cystic Fibrosis Resources

What specific resources have you found most helpful?

  • Benefits system. (Tilly, 8 years old)
  • Clinic. (Callum, 9 years old)
  • The Intermountain Health Care MyHealth website. (Alyssa, 17 years old)
  • Music and animals. (Elisabeth, 18 years old)
  • Others with CF- people to talk to. Programs have never really helped me out. (Chelsey, 20 years old)
  • Local doctors, and Cff.org. (Ashlye, 20 years old)
  • Just living my life, knowing my own body. (Cody, 22 years old)
  • My doctors. (Alison, 37 years old)
  • CF Association life coach. (Cindy, 41 years old)
  • Cystic Life, Reddit, CF Roundtable, my local CF chapter. (Lori, 43 years old)
  • My doctor. (Edward, 44 years old)
  • The CF community through social media, CFF, Online information. (Jane A., 49 years old)
  • Facebook pages. (Helen F., Knows 1 year old with CF)
  • Physio visits. (Clare, Knows Someone With CF)
  • We live in a rural area and support resources are not local…have to travel about 10 hours to our Pulmonary team at the U of M Hospital. (Cynthia D., Children w/CF ages 18 and 27)
  • Other parents. (Barbara P., Mother of child w/CF)
  • Other parents of CF children, an amazing pediatrician, an awesome clinic team. (Melinda, Mother of 2.5 year old w/CF)
  • Internet groups. (Amber, Mother of 4 year old w/CF)
  • BEF videos and CFF videos on living with CF. (Margaret M., Mother of 16 & 26 year olds w/CF)
  • Honestly, Medicaid insurance has paid for almost everything. Our clinic has been amazingly helpful. (Tessa, Mother of 15 month old girl w/CF)
  • Family, Facebook groups. (Paige, Mother of 1 year old girl w/CF)
  • Other moms, awesome clinic staff. (Cinda, Mother of 3 year old girl w/CF)
  • Facebook, Google. (Janelle, 2 year old grandson w/CF)
  • CFF, Facebook groups. (Wendy, Mother of 6 year old w/CF)
  • Medicaid, lol. (Kerri, Mother of 4 children w/CF)
  • Parents night out, clinic. (Summer, Mother of 11 year old son w/CF)
  • Google/Facebook. (Suzanne L., Mother of 26 year old daughter w/CF)