Tag Archive for: Clara Health

Spotlight On: Patients Have Power Campaign

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We are  proud to announce that we are official participants in the Patients Have Power campaign run by Clara Health.

This campaign is a nationwide initiative aligning thousands worldwide around one message: Patients. Have. Power.

The movement is comprised of patients, caregivers, allies, nurses, doctors, researchers, members of the healthcare workforce and anyone and everyone who believes in patient power all around the world.

This year’s campaign theme is entitled “Taking Patient Power to the Streets: From Hospitals to Hair Salons.” With digital being all the rage, we’ve increasingly seen advocacy and awareness move on line. While this is an exciting and effective way to reach a large audience, we believe boots on the ground, in-person initiatives are equally important. Healthcare should be human.

At Patient Empowerment Network, we believe patients should be empowered with the knowledge and resources they need to hold the ultimate power in their healthcare journey and are proud to say that we live the mantra: Patients Have Power.

We’re so excited to once again join in on the #PatientsHavePower campaign. Interested in getting involved and helping spread the word? Show your support by participating in the following:

  • Help raise boots on the ground awareness and drop off Patients Have Power magazines filled with patient art, essays, and stories at local community hubs.

  • Participate in the #PatientsHavePower Twitter Chat on October 2nd

  • Post a photo holding up a Patients Have Power sign.

  • Attend a Patients Have Power mixer in San Francisco or NYC.

Diving Into The Unknown: Chanel’s Clinical Trial Success

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Editor’s Note: This blog was originally written by Chanel White for Clara Health‘s Blog. Clara Health connects patients to breakthrough clinical trials.

Chanel White is a patient advocate who underwent a life-saving stem cell transplant in 2017 as a participant in a clinical trial in order to treat her Mixed Connective Tissue Disease. She blogs at The Tube Fed Wife and you should definitely follow her on Facebook, Twitter, Instagram, and Youtube.

In late 2011 I was diagnosed with an aggressive autoimmune disease called systemic sclerosis. The disease causes the body to overproduce collagen, which hardens your skin, vascular system, and internal organs.

My case had a very poor prognosis – a mere 10 years; however, my body went into widespread organ failure within the first three. I found myself at the age of 23 being fed through a surgically placed feeding tube in my abdomen, breathing through a small cannula attached to an oxygen tank, suffering the beginning stages of heart failure, and receiving home nursing visits to run infusions I was too sick to travel for.

I was once a vibrant young woman with a promising teaching career, to suddenly being robbed of basic human functions such as eating, and breathing. I was dying, and out of options after close to five years of failed treatments; it seemed nothing on the market could slow down my rapid progression.

After exhausting all the current treatment options on the market for my illness, my physicians turned to an experimental, but promising Phase 3 clinical trial.

Click here to read the full post at Clara Health.