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“This is what life is like living with an invisible and little understood disease like Fibromyalgia. Every moment of my life – both waking and sleeping – is mired in feeling unwell. But, I look healthy, and according to all objective, clinical measures, I should be."
- Amani Mohamed

THE PATIENT VOICE

Welcome to Issue 1!

Patients Rising believes that in our world of advocacy, nothing speaks more loudly – or more clearly – than the authentic patient voice. That is why each week we will make sure that it is presented in its finest form: the words and wisdom written and created by patients for patients. 

If you have ever felt that a doctor wasn’t able to give you the full attention your condition deserves, you aren’t alone. Doctor-patient communication is a common problem. This week Emily Levy writes about the importance of forming a partnership with your doctor. 

We meet Ann who is living with the ultra-rare disease, Stiff Person Syndrome (SPS). Since there is no official treatment for SPS, she struggles to get anything covered by insurance since everything is labeled "experimental." 

Also, check out our webinar archive featuring Taking Advantage of Clinical Trials, Navigating the Costs of Cancer, and Managing a Chronic Illness: a Guide to Organizing Your Care.

In our Good Reads section, we join KCCure in applauding the approval of new combination therapy for advanced kidney cancer. 

There is simply no substitute for the insight and ideas of the patient experience, and there is no limit to the ways it can make a true and lasting difference in the lives of others.  In our Created By Patients section, you'll meet gastroparesis patient, Carolanne Monteleone who is creating handmade feeding tube accessories at Crafting for A Cure

We choose to amplify these and many other patients voices as our organizations make the critical case that patients have a right to access the innovative therapies and personalized care they need and deserve. They also are living their lives and experiencing difficulties few take into consideration.  

By continuing to raise their voices through our Voices of Value blog and #RisingTuesdays campaign on Instagram, we aim for better ways to help ensure that the right patient receives the right treatment at the right time.

Keep Rising -- 

-- Terry

The Patient Voice is currently read by over 3,000 subscribers. Support us by making a donation, becoming a member telling us your story, or sharing this with friends and colleagues

Doctor-Patient Communication
Get Comfortable Telling Your Doctor the Truth >
Emily Levy talks about how the provider and the recipient of healthcare need to come together to form a partnership that focuses on doctor-patient-communication.

Stiff Person Syndrome
Frozen, Alone, Unable to Move >
Ann's Stiff Person Syndrome could kill her in a terrible way. She could die, alone, frozen and unable to move or call for help.

Webinars

from Patients Rising University
 

Check out our webinar archive >

New Therapy

KCCURE Applauds FDA Approal of New Combination Therapy for Advanced Kideny Cancer

Keep Reading

Crafting has always been my "thing". Ever since I was a young girl, I loved to create. So when I got sick with a chronic illness in April of 2013, I began to fill my time with artsy projects that I could easily do even when I didn't feel well. Due to gastroparesis, I became feeding tube dependent and I am the proud owner of a GJ tube. To make something dreary and depressing something fun and fashionable, I began to make my own feeding tube accessories! 
 
When my fellow tubie friends asked me where I bought my cute tube clips and pretty tube pads and I said “I made them!” They wanted them too. So, I decided to open Crafting For A Cure Co. so I could share my creations with others while also giving back. I donate pieces to the Newbie Tubie Project, which sends care packages to children and adults alike who are getting feeding tubes for the first time. 
 
My hope is that Crafting For A Cure Co. will brighten days with each order sent!

Carolanne Monteleone, Shop Owner

Visit Crafting for a Cure Co on Etsy

 

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