My four year old son has Cystic Fibrosis and it’s a topic I struggle with a lot. It pains me seeing what he has to go thru but it makes me so happy seeing this in my news feed on KZread. Because the word is being spread. The more awareness there is, the better for all those who suffer from CF! Hopefully we find a cure soon.

@hannakinn

4 жыл бұрын

I hope the new drugs and future new drugs will greatly benefit your son!

@koreymiller26

Жыл бұрын

My son has it too but he takes orkambi and it has made the world of difference. God bless

My best friend has CF and had a double lung transplant almost 15 years ago. He's 35 now and has a wife, two young children, a dog and a house. Unfortunately his sister died of the disease at 20 years old as she wasn't lucky enough to receive a transplant, but he's doing great. Happy to see this man doing well and good luck to everybody affected by the disease.

@vkrys1x

Жыл бұрын

My little sister is 17 and I’m terrified of her dying. I would sell my soul to cure or get her new lungs, even my own.

Thank you so much for sharing your inspiring story. Very grateful for your contribution and I am sure you have inspired so many people.

Yeah! I’m a black Cystic Fibrosis patient in my 50’s. I was diagnosed at 38 years old. I reside in Toronto, Ontario, Canada and I’m going to be on Trikafta in the next couple of days! I had a sweat test done last Wednesday & will have a CT scan on Monday to get some baseline results prior to going on the drug. I am so excited!

@michellegomez9114

3 жыл бұрын

Thank you for sharing your story. I also thought that CF was diagnosed at birth.

@JerubbaalgodSlayer

3 жыл бұрын

@@michellegomez9114 That's what the conventional thinking has been, but they are discovering more undiagnosed individuals such as myself, so it is no longer uncommon. The problem in my case such as mine is that because CF is thought to be a rare disease even among the Caucasian population, it is ever more rare that it is diagnosed in a Black person. A diagnosis of Sickle Cell Anaemia would have been more common. Dr. Tullis advised me (because I asked) that I am only one percent of the entire population of people to both those with and without a diagnosis of CF. Trikafta, by the way has been nothing short of a God send! I've been on it since November 28 and it has changed my life! I felt normal by the third day on the medication. I felt like how I did in my early thirties when I was healthy and there was no hint that CF would be diagnosed in me. I also unfortunately tested positive for Covid-19 in December (the swab wasn't as bad as I thought it would be) and my symptoms were only headache, fever and loss of appetite! I had not one incident of respiratory distress and the use of my Ventolin (rescue inhaler) has been negligible if any at all. Dr. Tullis the director of St. Michael's hospital CF clinic, seemed quite astounded by this, but prescribed 700mg of Ciprofloxacin twice daily (just in case) which I haven't had to take. The flu I was hospitalized for for fourteen (long) days in January of 2019, was by far much more worse than this bout Covid-19, and took me awhile to recover from. I feel fully recovered from Covid-19, like it never happened. I believe in God, though and I know His hand is in this in allowing me to get this drug and it working my body the way it is supposed to, and by not allowing Covid-19 to be the death sentence for my parents, who are in their eighties or myself. He is the One I give praise to. God Bless you.

@TheBod_LA

3 жыл бұрын

You don’t come across many African-American cf patients .. well at least not that I am aware of. My boyfriend who is also African American has CF and is getting ready to start his treatment for trikafta. Any feedback?

@Ib90

2 жыл бұрын

What where your symptoms before you were diagnosed?

@Vorylenus

2 жыл бұрын

@@michellegomez9114 I didn't get diagnosed until I was almost 6. Before that the doctors had told my parents that I was mentally challenged and a bunch of other things that would be considered malpractice. So much so, the Doctor that I had up until I was diagnosed lost his medical practicing license. He was caught changing paperwork and other things. It has become pretty common lately that CF isn't caught until later years. I am unsure why this is the case, but it has been. Maybe they see a "healthy" baby and think "We don't need to test them for this" or "They're Black, so they wont have it" is absolutely ignorant on their part. I will not take Trikafta, Orkambi, Symdeko, etc as I get a ton of negative side effects which include Insomnia, getting sicker (like they actually activated my CF and I filled up with mucous), my head felt incredibly off, and my digestive issues intensified. It isn't a godsend for everyone :/ Hope it works out for the others in this comment section with CF.

What an incredible human being!

It's awsome that Trikafta is finally here

Awesome story!

Awesome dude

Wow that’s amazing!! I can’t imagine how it must to grow up thinking u don’t have a long life expectancy.... I am sure u must really treasure each birthday.

Dear andy, i lost several of my friends dear to me with CF in the 1990s. At that rime here in Australia pulmozyme was just a trial ! I miss them all every single day: michelle dyer, jenny glenn, dimity simmons, Ruth williams (who got her transplant but was faced with chronic rejection) i miss and love you all

My 23 year has CF but started Kalydeco, without that he'd have died during covid.

💜💜💜💜💜

Lost my sis to Cf , she made it to 31

My son have cistic fibrosis he 9 years.

@hannakinn

4 жыл бұрын

I hope some of the new drugs will be beneficial for your son.

Wow this man wore a mask in 2019 lol

My great grandparents had 8 children and 4 passed away young from cystic fibrosis:,(

Any of us with Cystic Fibrosis that live beyond the age of 15 are defying the odds.... I was told I wasn't going to make it past X and then it was X and then it was X.... He isn't very unique or special... Just pretty common now with the advancements of medications and other factors, including his DNA. It isn't necessarily his activities that did it. Frame of mind helps to a certain degree. Everyone that I had met while growing up that had CF are gone. All passed on before they were adults. Every case of CF is different, we are on a spectrum. It just meant his CF wasn't as severe as others. Glad he is still alive, but he isn't special.

Awesome dude