Why #Cures2015 Should Matter To You

Healthy me, October 2013

Healthy me, October 2013

All it took to radically change my life were five words: you have Immune Thrombocytopenia Purpura. I was four months shy of my 28th birthday. I had been enjoying a very successful career with the largest rental car company in the world. Life was good! Then ITP came into my life and destroyed everything. My job dumped me, I had friends disappear, my mental health suffered and I had to figure out what to do. How could I rebuild my life that I had just started? Why me? Why now?

The truth is, it can happen to anyone. Becoming a rare disease warrior was a choice, having a rare disease was not. Until May 1st, 2014 I thought rare diseases were only linked to genetic issues, my ignorance showed me! I was pushed into a world with a lot of questions and few answers. Overwhelming side effects, but few effective treatments. I spent some days laying in bed and wondering if it would have been better if I just died, or I got cancer. I felt it would have been easier to have an opponent that people could relate to, doctors could treat and I could discuss. When the enemy is your own immune system and blood is involved, people tend to stay away.

Internal bleeding from ITP leaves nasty bruises.

Internal bleeding from ITP leaves nasty bruises and causes people to stare.

I’m not saying that everyone can get ITP, truth is we don’t have enough information to understand how it works. Not everyone will have a rare disease, but as many as 1 in 10 Americans do. Chances are, every single one of us knows someone fighting this battle. Some people choose to deal with it privately, and that is okay. I can’t stay silent about what I’ve been through because I enjoyed many years of living a life with no limitations. Now, I want to push the limits so every rare disease warrior can live life to the fullest. I remember what it was like to wake up every day and worry about how well the Noles were going to play on Saturday. Now I wake up and hope that I’m not covered in bruises and blood.

This has to change.

The 21st Century Cures initiative will change medicine for everyone, rare or not. It is critical legislation that can drastically improve innovation for new drugs and devices. This isn’t just for the rare disease community, it is for everyone! Congressman Fred Upton, the chair of the Energy and Commerce Committee with Congresswoman Diana DeGette have made the initial push to reform discovery, development and delivery of drugs and devices. Other members of Congress such as Gus Bilirakis have introduced bills that would continue to push reform and innovation without costing tax payers extra money.

What can you do to help? Write to your Representative and ask for their support of the OPEN ACT. This is the first piece of legislation that will push us in the right direction for medical innovation in America. It is a bi-partisan bill that will benefit all Americans for years to come. We have some of the best doctors and researchers in the world, yet our laws limit their abilities to continually work towards finding new treatments and cures.

This will help America continue to be a global leader in medicine!

4 thoughts on “Why #Cures2015 Should Matter To You

  1. i know who what where to cure several diseases from LOU GERIGS disease to some cancers like BRAIN cancer………….but NO one cares…………….the NONtoxic cures are kept from the public…..the number two most profitable business is SICKNESS………………..so drug firms will not make any cure nor allow any cure to be released (they have their puppet the FDA to deny the good drugs from coming to the market place) unless that cure has many many horrible side effects (so SICKNESS still exists and money to be made) and even then they hate to cure any disease and merely treat symptoms instead….i can send you proof of what i say…. so what’s to do….RUN FOR THE CURE is STUPID JUNK!!! waste of time and money goes to docs who do not want to cure anything!!! so what’s to do……………………….have a federal judge issue a ruling/statement/opinion….that all patients and parents of minor patients have the RIGHT TO LIFE LIBERTY AND PURSUIT OF HAPPINESS and therefore the right to REJECT any and all treatments and medicines and also the right to CHOOSE and receive (and have it paid in full by her health insurance who has NO right to say they dont cover experimental or understudy drugs!!!) any drug and any treatment the patient wants even if
    experimental, or understudy or all natural or alternative medicine!!!
    Patients and relatives of patients can CHOOSE Pallative DEATH (they keep patient comfortable but don’t work hard to keep them alive) or even elect suicide injection from doctor or choose NO resusitation….but they can NOT choose to LIVE can NOT choose life liberty and pursuit of happiness….a girl recently (17 year old beauty) was taken by FORCE and given horrible chemo that is not safe nor effective for curing he cancer!!! Yet they force it on her….there are nontoxic things for her but they are not suggested not mentioned and certainly not given……………..why do patients and families have the legal right to choose death BUT no rights at all to choose LIFE !!!
    The FDA has the curse word PROTOCOL which says who gets what drug and when…and how is it given…it denies nontoxic cures to almost all people almost all the time…and demands that you get horrible chemo and surgery and radiation before you are even allowed to ask for nontoxic medicines or treatments…..there are a few nontoxic cures for cancer that i know of (ASK ME) and even a CURE NOW for ALS (Lou Gerigs disease) but not allowed to be used……………all the good stuff is understudy… used on one to five people over 20 years…..and not advertized or carried by news media so the drug DROPS out of site and it never approved….dead in the water…but HORRIBLE chemo that KILLS patients (they suffer each time they get it and it destroys their liver and kidneys) is immediately approved by FDA in weeks not twenty years and without proving safe and effective because it is NEITHER!!!
    so get federal judge to declare all patients have right to life liberty and pursuit of happiness and the FDA can not deny them their rights to choose any meds and treatments even if not approved by FDA even if under study or experimental…..if even ONE person or animal has been cured by nontoxic cure for horrible disease….why shouldn’t thousands of suffering and dying patients have access to that drug and treatments…..and perhaps they too will be saved….without it they will suffer and die for sure…with it they have a chance!!!!!!!!!!!!!!!!!!!! they will want to take that chance…wouldn’t you! ask me for more info…………….i know what bribe the drug firms want to let this happen

  2. so what does drug firm want……………….to allow life saving drugs on the market???they now do NOT allow any nontoxic cures on market NOT ONE!!!!
    give them guarantee from govt that when the sick patients become much less and their patient load is down 70% because they release the nontoxic cures….
    suppliment their lost income so they NEVER make LESS PROFITS….and also
    all their profits from nontoxic cures should be Triple TAX FREE!!! (for drug firms and for doctors and for hospitals)and quarantee the income of doctors and hospitals also does not go down!!! also give drug firms 50 renewal patents on any nontoxic cure even if all natural….patients do not care if they were told to eat hot dog and mustard with choc syrup and selzer and garlic and zpak and their cancer is cured…..if natural stuff cures disease give the drug firms a patent!!! curing is what counts! and making natural stuff (harmless) into syntheitcs (so can be patented) is what makes most of the SIDE EFFECTS!!!!

  3. Thank you for sharing your story, my best friend had ITP, she passed away. In her honor I wanted to do a walk but can not find one. Do you know of any?

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