Tuesday, October 27, 2015

I saw Pyramids being built!

Why it was AWESOME being born in the 1980s.

Besides our mom's awesome hair-dos right? Well, there are some perks to being born in the 1980s with Cystic Fibrosis. You may think I'm joking. I mean, what perks? Right? We didn't have almost any of the
beneficial medication or research that we do today. Because of this lack of research & proper meds the expectancy of life was around 10 years of age when I was born. Sadly, this was pretty accurate in my life as I watched 3 best friends pass away between the ages of 10-14. It was tough having CF or a child with CF in the 1908s. Our treatments took longer and the machines were wickedly heavy. Parents didn't have the vest machine, my own mother had to do manual chest percussion on me multiple times a day (up to four times).

In the 1990s, pulmozyme was introduced and some research started to take off (but nothing like today). Most people in the 1990s still didn't know what CF was and had never heard of it. With a few new medications the life expectancy raised to around 14, then to 18 years of age by the late 1990s.

Today it is around 37 years old (my age in 7 years). Babies born today with CF will live a much healthier & "normal" life thanks to new devices cutting treatment times in half.  Being born today with CF doesn't mean society automatically writes you off or thinks of you as a death sentence. Heck, I wasn't put into prep college high school classes ( my counselors assumed I wouldn't go to college, and my parents were unaware of it). It's crazy to think how far we have come!

That's the cool part. I, myself, have gotten the privilege of watching CF research bloom and really take off. I truly believe the 1980- 2020 time period will be the single biggest impact/ jump in CF advancements ever!!! And I lived through it! That's soo coool.

Ever think it would be cool to go back in time and watch how the Egyptians built the pyramids???  Well, for CF the 1980-1990's were the "Egyptian Time Period," we were just starting out and learning our way in medications/treatments. So...

 I saw Pyramids being built!!!! 

Or even better, hopefully one day I can say " I saw the Rise & Fall of Cystic Fibrosis."

Not only do I get to see friend's live longer lives thanks to research, meds, transplants, and much more, BUT the quality of life we lead is getting better too! I want to continue to help make this possible. AND I love that I get to be a part in the furthering of CF research trials!  Here are the trials I have done over the years!

As a child I did:

[Fun fact: Pulmozyme & Tobi were the two first clinical trials tested on children with Cystic Fibrosis and BOTH are huge drugs in the CF Market, and I did both of those trials!!!!- how COOL!!!!]

Here they both are in my fridge!! [Note: old pic, I'm not on IVs right now... no worries]

1. Pulmozyme- Genentech Study,  Here  is a little History of Pulmozyme & when trials were. For more info on Pumolzyme check out their website!

2. Tobi-  Here is a little history of Tobi & when trial were. Attached HERE is a PDF about Novartis's Tobi.

3. Creon Enzymes- Here is some info on Creon!

As an Adult I have done:

1.KB001-A, Study by  KaliBios, which was an anitbody I got intravenously that is used to treat Psuedomonas Aeruginosa. Read Press Release here or my blog post from when I was in the trial here! 

2. Cayston & Tobi Alternating- A Gilead Study, which was to determine if Aztreonam (Cayston) inhalation med and Tobi (inhalation) work better when used in alternating months. [Note: I had already been doing this for years, so this trial wasn't anything new. Unless, I got the placebo] Here is the only online info I can find now!

I tried to do Inhaled Mannitol (but right before starting it, I ended up on antibiotics). AND in the next few weeks I will be hopefully starting this trial: Parion Sciences Study Info HERE!

It's awesome to be able to help contribute to the future well being of CF patients & watch such big leaps in research happen! Just today, I posted another amazing article on my CF facebook page about genetic editing with Vertex collaborating with CRISPR therapeutics. Watch my CF facebook page for more updates!

I can't wait to start this next trial and watch the next big discovery in CF research take place!

I want to keep participating & watching those pyramids be built! 

- and a big thank you to YOU for donating & helping make it happen!

ps. CFers-What trials have you done or research are you excited about? 

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