Rare Disease

Stories and health tips from people living with rare disease or undiagnosed conditions.
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"We need to think before we speak." Social Media, Instagram, Escuela, Media, Oppression, Cyber, Cyber Monday Banner, Interpersonal, Bane
Why This Common Slang Word Harms People With Cerebral Palsy
"We need to think before we speak."
"Before I drifted off to sleep I thought, 'This is it.' This is how the rest of my life is going to be." Youtube, Meditation, Heavy Rain Sounds, Idiopathic Pulmonary Fibrosis, Rain Sounds For Sleeping, Depressive Disorder, Sleep Disorders, Neurology, Disorders
Why I'm Trying to Accept the Limitations That Come With Being Sick
"Before I drifted off to sleep I thought, 'This is it.' This is how the rest of my life is going to be."
"While everyone says it should not matter how we look — it does." Health, How To Feel Beautiful, Look Back At Me, Physical Health, Treatment, You Changed, Rare Disease, I Support You, Look In The Mirror
When the Treatment for Your Rare Disease Changes Your Appearance
"While everyone says it should not matter how we look — it does."
These visceral descriptions show the reality of living with gastroparesis. Tired After Eating, Brain Health, Unmotivated, Feel Tired, Stress Management, How Are You Feeling, Stress Management Techniques, Underactive Thyroid
When Eating Isn't Easy: Navigating Life With Gastroparesis
These visceral descriptions show the reality of living with gastroparesis.
Mighty editorial assistant Skye Gailing spoke to Jenni Nolan, a board certified patient advocate and founder of Clear Healthcare Advocacy, about medical billing, navigating health insurance, and how the rare disease community can set themselves up for financial success. Health Care, Editorial, Medical Billing, Insurance Company, Health Insurance, Medical Debt, Patient Advocacy, Insurance
'You Shouldn't Have to Do This Yourself': Q&A With Jenni Nolan, Board Certified Patient Advocate
Mighty editorial assistant Skye Gailing spoke to Jenni Nolan, a board certified patient advocate and founder of Clear Healthcare Advocacy, about medical billing, navigating health insurance, and how the rare disease community can set themselves up for financial success.
"I never thought I would be so happy to find out I had a tumor." Feelings, People, Mental Health, Fear Of Flying, Poor People, Gaslighting Example, Why Do People, Bullying Prevention, Mental
How Doctor-Delayed and Missed Diagnoses Harm Patients With Chronic and Rare Illnesses
"I never thought I would be so happy to find out I had a tumor."
"When a doctor cares, they don’t give up. They think, they try, they evaluate, they listen, they learn, and they don’t give up on you." Zebras, Horses, Zebra, Animales, Doma, Hooves, Tired, Caballos, Just Smile
In Defense of Just Ordering the Damn Tests
"When a doctor cares, they don’t give up. They think, they try, they evaluate, they listen, they learn, and they don’t give up on you."
"The timing of this conversation is particularly difficult." Inspiration, 21 Questions Game, Questions To Ask, Question Game, Getting To Know You, Ending A Relationship, Moving In Together, Personal Questions, 21 Questions
It's Not Easy to Tell Your Partner About Your Rare Disease
"The timing of this conversation is particularly difficult."
"Lab tests alone aren’t the solution to the puzzle." Medical Care, Health Magazine, Endocrinologist, Government, Family Health, Obamacare, Health Issues, Gastroenterology
Why Genetic Testing Isn't All You Need When You're Undiagnosed
"Lab tests alone aren’t the solution to the puzzle."
"Such a simple phrase, yet what an incredible analogy for a life with medical complexity." Learning, Rare Genetic Disorders, Analogy, Genetic Disorders, Disease, I Work Hard, Medical
Learning to Live With the Unknown of a Rare Genetic Disorder
"Such a simple phrase, yet what an incredible analogy for a life with medical complexity."
"Though each disease affects a small amount of the population, when we are joined together, the community’s experience feels huge." Cool Designs, Free, Beautiful, Picture, Print, Rainbow Zebra, Image Gifts
Why the Rare Disease Experience Is Not so Rare After All
"Though each disease affects a small amount of the population, when we are joined together, the community’s experience feels huge."
"I must advocate for myself, even if it makes professionals uncomfortable." Occupational Health And Safety, Medical Professionals, Mental Health Care, Emergency Department, Emergency Medicine, Health Administration
Most ER Staff Don't Understand Rare Disease, So This Is How I Advocate for Myself
"I must advocate for myself, even if it makes professionals uncomfortable."
"The only person I am measuring myself against is me." Fitness, Fit, Lifestyle, You Fitness, Hiit, Fitness Nutrition, Rehab, 5 Ways
How I Avoid the Comparison Trap When Doing Pulmonary Rehab at the Gym
"The only person I am measuring myself against is me."
"I was the first of my family to be diagnosed with this illness, but then pieces began to fall into place." Lunges, Personas, Asa, Respiratory Diseases, Kinder, Childhood Asthma, Asthma
What I Mean When I Say 'I'm Purely a Lung Girl'
"I was the first of my family to be diagnosed with this illness, but then pieces began to fall into place."
Hint: It's nothing like what you see on TV. After Surgery, Woman, Women, End Of Life, Salute, Vida, Hospital
What It Was Like Recovering From a Medically Induced Coma
Hint: It's nothing like what you see on TV.