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Scleroderma

My Advice to Parents of Atypical Children

Lisa Goodman-Helfand | Posted 01.19.2017 | Parents
Lisa Goodman-Helfand

“I remember being so curious about your condition in high school, but too sheepish to ask you. You inspired many investigative diagnostic queries in...

Why We Must Teach Our Daughters the 'Sisters Before Misters' Rule

Lisa Goodman-Helfand | Posted 12.02.2016 | Parents
Lisa Goodman-Helfand

His name was Marshal. I met him the summer before my freshman year of high school. He was the first boy who confirmed what I’d already suspected. Ma...

I Asked For A Massage And Got A Tiny Taste Of Prejudice

Lisa Goodman-Helfand | Posted 11.18.2016 | Healthy Living
Lisa Goodman-Helfand

I think about skin a lot more than most white people. I know that’s a really weird statement, but it’s true. Because my skin looks so different, I...

At Least It's Not Cancer -- A Prejudice That Harms Patients

Chanel White | Posted 02.22.2017 | Healthy Living
Chanel White

Please recognize that comparing one's illness to another is not an appropriate way to console a suffering individual. Let's break this negative habit; everyone fighting a battle deserves to be respected, and extended empathy, whether you have heard of their illness or not.

10 Surprising Perks Of Female Hair Loss

Chanel White | Posted 12.18.2016 | Healthy Living
Chanel White

Once a woman who spent hours primping her features to perfection, I now found myself with a very conspicuous, very shiny bald head. I have decided however, that there are actually some pretty awesome perks to rocking the bald look!

Chemotherapy Isn't Only for Cancer Patients

Chanel White | Posted 12.08.2016 | Healthy Living
Chanel White

Upon hearing the word 'chemotherapy,' most people jump to the same conclusions, with the same general consensus on how chemo works, who receives it and what side effects it has on the body. The truth is chemotherapy isn't only for cancer patients, and affects each patient differently depending on how it is used.

The Difference Between 'Living With a Terminal Illness' and 'Dying'

Chanel White | Posted 11.12.2016 | Healthy Living
Chanel White

Someday again I will be dying, lying in a hospital bed with only days left ahead of me -- and truthfully yes, if you want to define "dying" as losing a battle to illness then I am in every sense of the term dying... but personally I like to call residing in this defective body, riddled by disease: successfully, and enthusiastically living.

An Open Letter to the Person Staring at My Medical Devices

Chanel White | Posted 09.29.2016 | Healthy Living
Chanel White

This is actually a great opportunity for me to spread awareness about my disease, and to educate other individuals like yourself about respectful ways to interact with patients like me. With my hectic medical schedule I have little time to speak to anyone besides doctor, nurses, or front desk staff, so our conversation could actually be the highlight of my day.

An Open Letter to Presumptuous Care Providers

Chanel White | Posted 09.16.2016 | Healthy Living
Chanel White

To be honest, your judgment of me was made before I even entered those clinic doors. You made your verdict while reading my chart notes from the last doctor who, chances are, didn't ask me either.

Are Your Hands Almost Always Cold? You Might Have Raynaud's Syndrome

Jill S. Brown | Posted 08.11.2016 | Healthy Living
Jill S. Brown

If you have severe Raynaud's you can talk to your doctor about medical treatments. Some medications can help widen the blood vessels like vasodilators and calcium channel blockers, while others medications may aggravate the situation.

Why Phrases Like 'Dream, Believe, Achieve' Never Stuck With Me

Chanel White | Posted 07.31.2016 | Healthy Living
Chanel White

I myself believe strongly in the power of miracles, however, I will not put my life on hold for something that may not manifest itself in my lifetime. I would much rather be prepared for the wreckage, than live in fear of it.

The Lure of the Lulu: Navigating Brand Name Obsessions

Lisa Goodman-Helfand | Posted 06.25.2016 | Parents
Lisa Goodman-Helfand

"Mom, can I get a pair of UGGS? I've never had a pair in my whole life." Should I alert the media? My daughter has lived nine years without ever slipping her foot into an UGG boot! This is madness!

Take a Tragic Moment, Sprinkle Some Humor, And Shake Vigorously

Lisa Goodman-Helfand | Posted 06.17.2016 | Women
Lisa Goodman-Helfand

"Since you killed Dad today, I'll buy the pie." I uttered those precise words to my sister, Heidi, on December 1, 2013. Before you call the cops, let me explain.

How Illness Taught Me That Broken Things Can Still Be Beautiful

Chanel White | Posted 06.15.2016 | Healthy Living
Chanel White

Life is a fragile thing. In an instant it can be destroyed by a circumstance beyond your control; the existence you knew shattered like glass beneath your feet.

Bob Saget Shines a Light on Scleroderma With Cool Comedy -- Hot Cuisine

Xaque Gruber | Posted 05.26.2016 | Healthy Living
Xaque Gruber

In 1982, management consultant and former competitive figure skater, Sharon Monsky was diagnosed with scleroderma (in Latin "hard skin") a rare, potentially fatal disease that hardens the skin and internal organs and often strikes women of child-bearing age.

Who Did I Need to Impress?

Chanel White | Posted 05.12.2016 | Healthy Living
Chanel White

When you must face the weathered look of chronic illness day in and day out those fleeting glances in the reflection can become quite unpleasant. The ...

Even Though My Body Continues to Fail Me, Every Fiber of My Being Feels Strengthened

Chanel White | Posted 05.06.2016 | Healthy Living
Chanel White

While I may not get as many years as I was hoping for in this life, I feel my very soul has lived a thousand years. This old soul, enlightened well beyond my 23 years, finally understands the true beauty in life.

Queen Latifah Shares Inspiring Story About Her Mother's Illness

Huffington Post | Brennan Williams | Posted 05.28.2015 | Black Voices

Before she was boasting the highest daytime television premiere with the debut episode of “The Queen Latifah Show” last September, Queen Latifah ...

Live Like We're Dying

Jonathan Winegarden | Posted 06.25.2012 | Home
Jonathan Winegarden

Early this year my 15 year old sister was diagnosed with a disease called Scleroderma, which attacks the lungs heart and kidneys as well as other parts of the body. I want to give her one trip to anywhere she wants to go in the country.