Dalelorenzo's GDI Blog

Living with Idiopathic Pulmonary Fibrosis

Recently we chatted with Bill Vick, founder of PF Warriors, a non-profit radical for people living with pulmonary fibrosis, including idiopathic pulmonary fibrosis( IPF ).

Being diagnosed with IPF, as with many other rare illness, can feel both overwhelming and bewildering. For countless, the first time they've heard about the condition is when they get a diagnosis. IPF outcomes in irreparable scarring of the lungs, which progressively deteriorates lung function. It's terminal, and there is no cure. But there is some promising research underway, and last year, 23 andMe propelled a genetic study of idiopathic pulmonary fibrosis. We connected with Bill and PF Warriors through that work.

Bill's excursion might explain the use of the word " warrior" in name different groups. Before a job as a serial industrialist -- leader up large-scale sales splits, propelling computer software companionships, and creating his own executive recruiting firm -- Bill was a Force Recon Marine. After he retired from business, he became a competitive lords department contestant and brought that same kind of intensity first sounded into as a Marine and then raised working in the corporate nature. To prepare for competition he included daily operates, swimmings, weight face-lift, or exercisings in the gym. It was while training for a competition that he noticed his dive times lowering. He too noticed that he sometimes had difficulty catching his breath.

It made a while to get a diagnosis, and when he did, it was jarring. He had never heard of Idiopathic Pulmonary Fibrosis before, and he didn't know how he got it.( Idiopathic symbolizes no known cause .) And he was told there was no treatment. So after coming home from the doctor that day, he and his wife Patti decided that he should get his affairs in order, and then the two of them could knock off their" bucket roll" of things to do while Bill still could. So they celebrated their 50 th uniting anniversary. Bill was 72 at the time. He thought he only had two or three years to live.

But that was ten years ago.

Bill after completing a 5k during his training periods.

What are some of the common themes you've heard from beings about first getting diagnosed?

I, like numerous, was diagnosed by chance as I had a cough, weight loss, and shortness of breath that my family doctor could not explain. And you are familiar with, if I hadn't been instructing so hard and been so in tune with minor the changing nature of my torso, I might not have noticed.

I was 72, but I was an active triathlete, and I'd been a competitive jock all my life. I was training for a short course race here in Texas and started noticing my dive days stopping. So I went to my doctor, and he thought it might be athletic asthma or bronchitis or COPD, and gave me an inhaler, and then a nebulizer. But that didn't help much. I think that went on for about a year before I went to a pulmonologist. They did a high-resolution CT scan and a biopsy.

When the results were in, they called and told me to come in and wreaking my wife, Patti. So we were heralded into a small waiting room, and the doctor comes in and says 😛 TAGEND

“You've got a rare disease, IPF. It's a lung sicknes with no dry and good-for-nothing to stop it. You should go home and get your occasions in order ."

Why are so few people, including physicians, aware of IPF?

Well, it's a uncommon ailment. I envision medical doctors had received maybe one or two other beings with it in his whole career. So when I got my diagnosis, there exactly weren't many resources out there to find out more. And that's one of the reasons why we are beginning PF Warriors. As I talk to other both patients and radicals, the same kinds of questions come up. That's why it helps to hear from others who are going through the same thing. We now have 2,400 members worldwide and are located in 19 countries.

It made me a couple of years, but I got to this point that I wasn't saying that I'm dying from this sicknes, but that I'm living with it.

Typically, the survival rate after diagnosis is two to three years. You got your diagnosis a decade ago. How have you been able to do so well for so long?

My advantage was that I was a competitive athlete attuned to my person. So is not simply was I in immense condition but I got diagnosed perhaps earlier because I very quickly noticed the modifications to my body.

But we don't really know a lot about this cancer. There's still a great deal of innocence out there, and that's why the work requires more experiment. I've also interested by being one of the first people prescribed Esbriet( r)( pirfenidone ). I started taking that when I was 75, and it can help sluggish the scarring of your lungs or advance of pulmonary fibrosis.

A couple of years ago I was just talking to the status of women who was a chap IPF patient specified Peggy and I expected her about how long I had to live. She said anything about sounding the diagnosis of dying in two or three years and she smiled and said 😛 TAGEND

" When you can find the expiration date that God tattooed on your posterior, believe it, but until you do, make each day as it comes and live it perfectly ."

Bill Vick

What do you think is the biggest value of having an organization like PF Warriors?

It's meeting parties like Peggy in Florida with something to say, but it's also crowdsourcing report with others, having a place where you can go for information or questions or support. You know, if you have a doctor who you talk to, that's a certain channel for knowledge but talking to someone like you who has it, it's a different kind of conversation.

Recently you invited 23 andMe's John Matthews to speak to your group. He is the Senior Clinical Development Leader for Therapeutics at 23 andMe. He is also a physician who training in pulmonary medication. Why did you ask him to speak, and what did he share with you?

John discussed 23 andMe's work in dope breakthrough and 23 andMe's ongoing effort to recruit 1,000 people for a genetic study on IPF. As a outcome, we've had other researchers and resulting scientists in the field to talk. It's a way for us to stay informed and preserve ahead of the arc. John ambled through the persona genetics plays in disease and how 23 andMe uses genetic information materials and other information to find possible treat targets. He also refuted a great deal of questions from our members who participated in the discussion.

What are your thoughts about the potential for finding new medicines?

I think studies like this, using genetics, are critical. But it isn't easy to get enough parties( with IPF) to participate. This is a same problem with clinical trials, simply discovering beings willing to participate, but you need people if you want to see substantial breakthroughs. I'm hoping we can help 23 andMe with that. I'm optimistic that we will find a medication and therapy, maybe I won't be around to see it, but I want to do whatever I can to help.

The post Living with Idiopathic Pulmonary Fibrosis showed first on 23andMe Blog.

Read more: blog.23andme.com

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