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re: Big Day for us (Family related and kinda long)
Posted on 9/7/16 at 7:39 pm to ShermanTxTiger
Posted on 9/7/16 at 7:39 pm to ShermanTxTiger
That's good to hear. Every year they add leads to a potentially exponential development.
Good luck to y'all
Good luck to y'all
0
Posted on 9/7/16 at 7:42 pm to ShermanTxTiger
That is awesome. I have a cousin who died from CF in the 70s....never met him. His parents are very well to do and did everything possible at the time. Great to hear science has progressed to this point.
Posted on 9/7/16 at 7:43 pm to ShermanTxTiger
quote:bet the over for her,, she's already proven she'll defy expectations
I just checked and the life expectancy moved up to 40. Thanks for asking.
Posted on 9/7/16 at 7:51 pm to ShermanTxTiger
That's awesome news!
Posted on 9/7/16 at 7:59 pm to ShermanTxTiger
"Merica!
So happy for you, your family, and others affected by this disease. Sometimes a little hope is all you need. Perhaps others will have similar results with this drug.
Posted on 9/7/16 at 8:00 pm to ShermanTxTiger
That is so awesome.
My niece struggled with this terrible disease, she passed away 2 years ago at the age of 17.
My niece struggled with this terrible disease, she passed away 2 years ago at the age of 17.
Posted on 9/7/16 at 8:05 pm to ShermanTxTiger
I dont believe you. This board says the evil drug companies dont care about making drugs to help people, they only care about money
But seriously thats awesome
Its an awful disease
But seriously thats awesome
Its an awful disease
This post was edited on 9/7/16 at 8:06 pm
Posted on 9/7/16 at 8:19 pm to Cosmo
quote:
I dont believe you. This board says the evil drug companies dont care about making drugs to help people, they only care about money
The new medication that was a game changer is called Orkambi. It costs $200,000 a year. Before everyone goes nuts... It was developed for a target group of 18,000 people. The disease is very complex and the drug works in a complex manner. The R&D took over 12 years. It has to be paid somehow or it would never be developed. The maker is not Lilly or Merc. Those guys are focused on other broad spectrum drugs.
Also, no socialized medicine system in the world allows it for CF patients due to costs
Posted on 9/7/16 at 8:20 pm to ShermanTxTiger
man, that is great to hear...certainly makes me think about what is important and what is not... 
Posted on 9/7/16 at 8:24 pm to ShermanTxTiger
I had a pledge sister with CF. She passed three years after we graduated. She was such a positive person and didn't let her disease hinder her in anything she wanted to do. I still miss her. RIP Stephenie.
So happy that advances have been made and that your daughter is thriving.
So happy that advances have been made and that your daughter is thriving.
Posted on 9/7/16 at 8:25 pm to ShermanTxTiger
Great news man! whats the name of the medication?
Just saw it posted
Just saw it posted
This post was edited on 9/7/16 at 8:29 pm
Posted on 9/7/16 at 8:31 pm to BamaChick
quote:awwww sorry for that
I still miss her. RIP Stephenie.
And no OT'ard should ever apologize for posts like this I don't care how long they are, I love the good news
Posted on 9/7/16 at 8:33 pm to ShermanTxTiger
Much love and good vibes to you and your family!
Posted on 9/7/16 at 8:40 pm to ShermanTxTiger
Posted on 9/7/16 at 8:41 pm to ShermanTxTiger
Great news, thank you for sharing. Stories like these really are really needed. I hope your daughter can now live a long and healthy life. It's really a miracle.
Posted on 9/7/16 at 8:45 pm to ShermanTxTiger
I got goosebumps reading your post. Congrats on the great news! You and your wife should be so proud of yourselves and your entire family for being so courageous, strong, and patient throughout what I can only imagine has been a long and challenging journey. God bless and thanks for sharing the great news.
Posted on 9/7/16 at 8:46 pm to BamaChick
quote:
I had a pledge sister with CF. She passed three years after we graduated. She was such a positive person and didn't let her disease hinder her in anything she wanted to do. I still miss her. RIP Stephenie.
They are special people. When we first got the diagnosis I did everything I could to learn about the disease. I ran across a guy who was 35 and at the end of his fight. He befriended me and told me all he knew.. The good, bad and ugly. I called him often. Mostly when he was hospitalized. He told me several times his time was ending but he had great confidence our daughter (Madison) would beat the disease. He passed in 2005 when he went for a lung transplant knowing the survival rate was less than 10%.
I have learned a great deal from these people about life and what is really important.
Posted on 9/7/16 at 8:52 pm to ShermanTxTiger
Great News!
Posted on 9/7/16 at 8:57 pm to ShermanTxTiger
What a great story. .... God bless you and your daughter
Posted on 9/7/16 at 8:58 pm to ShermanTxTiger
My brother's good friend has CF. She fights every day. She has good days and bad days. It depends on the weather, humidity, and tons of other things.
She is a beautiful amazing girl and I hope she can hang on forever. We love you, Kristen!
Prayers to your daughter. Enjoy every day.
She is a beautiful amazing girl and I hope she can hang on forever. We love you, Kristen!
Prayers to your daughter. Enjoy every day.
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