15 encouraging quotes for your chronic illness journey

Posted on February 23rd, 2017

Healing “These pains you feel are messengers. Listen to them.” –Rumi, The Essential Rumi   “Some people see scars, and it is wounding they remember. To me they are proof…

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Share your rare disease story

Posted on February 16th, 2017

Telling your rare disease story can positively impact so many aspects of a journey often fraught with anxiety. You can simultaneously raise awareness for your condition while connecting with a…

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Morning routine with chronic illness

Posted on February 9th, 2017

Chronic illness can be a bit of a roller coaster. Many people talk about having times of flare ups followed by times of relative wellness. But according to research, establishing healthy routines…

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Prepared patient checklist

Posted on February 7th, 2017

When living with chronic illness, especially a rare and life-threatening one, doctor visits are frequent and part of the routine. To be your best advocate, you must prepare for your…

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Raising awareness for chronic illness from home

Posted on February 2nd, 2017

If you have a chronic illness, you know just how important it is to help more people understand how common and life-changing long-term sickness is. But you also might not…

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Close Up: Nellie Capehart

Posted on January 31st, 2017

I have been married for close to six years, to a loving and supportive husband and we have two bright and beautiful little girls under the age of 4 who…

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At a glance: Factor XIII

Posted on January 26th, 2017

The body makes 13 blood-clotting factors and if any are deficient, blood doesn’t clot properly and a bleeding disorder results. The Factor XIII protein stabilizes blood clot formation—without the protein,…

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Faith and hope in life with Phelan-McDermid syndrome

Posted on January 24th, 2017

Jodi Frunzi’s 16-year-old son, Michael, loves making friends and talking on the phone. She describes his life with Phelan-McDermid syndrome. When our son Michael was 1 year old, doctors asked…

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A few simple ways to practice gratitude

Posted on January 19th, 2017

Expressing or meditating on gratitude when you have a chronic illness can improve your wellbeing, according to a growing body of research. While it might not come easily or naturally,…

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Buckle up and keep going with HD

Posted on January 17th, 2017

J. Daniel Miller was diagnosed with Huntington’s disease when he was 21. No one in his family had heard of the disease. When I was in middle school, I was…

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5 free apps for managing chronic illness

Posted on January 12th, 2017
free apps for managing chronic illness

Apps have great potential for making life with chronic illness a little easier. But finding the ones that work well for your needs can be difficult. To help, we compiled a…

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Healing attitude in PH

Posted on January 10th, 2017

Lisa Skeeters Lisa Skeeters explains how a close-knit group of friends is the best medicine for her pulmonary hypertension. I was born with a congenital heart problem, tetralogy of fallot…

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What to expect after an SSA disability approval

Posted on January 5th, 2017
after disability approval

We designed the first three Legal Corner installments this year (found in the Spring, Summer and Fall issues) to walk you through the Social Security Administration (SSA) disability application process….

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Help from a diagnosis

Posted on January 3rd, 2017

A doctor finally diagnosed Michael Guerra with complex partial seizures in his 50s, after he’d had seizures since age 11. As a result, he found a treatment that works. When…

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Body image and chronic illness

Posted on December 29th, 2016

If you have a chronic illness, you already know that one of the many challenges you face is maintaining a healthy body image. Chronic illness can affect body image in…

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