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." Bane, Cyber Monday Banner, Bold And Brash, Interpersonal Communication, Slang Words, Highly Sensitive Person, One Small Step, Internet Technology, Cerebral Palsy
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." Stress Disorders, Sleep Disorders, Pranayama, Healthy Sleeping Positions, Hips Hurt, Heavy Rain Sounds, Meditation Musik, Meditation Spaces, Idiopathic Pulmonary Fibrosis
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." Iron Infusion, Prednisone, I Support You, Look Back At Me, Rare Disease, Steroids, Look In The Mirror, Physical Health, Go Outside
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. Low Thyroid Symptoms, Thyroid Hormone, Thyroid Health, Brain Health, Tired After Eating, Malabsorption, Underactive Thyroid, Weight Loss Drugs, Stress Management Techniques
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. Medical Debt, Medical Office, Medical Billing, Financial Assistance, Financial Success, Insurance Company, Health Insurance, How Do You Work, Patient Advocacy
'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." Why Do People, Poor People, Bullying Prevention Month, Fear Of Flying, Domestic Abuse, Gaslighting, Social Anxiety, Poverty
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." Create A Superhero, Daytime Sleepiness, Doctor Care, Rem Sleep, Primary Care Physician, Usual Suspects, Lack Of Motivation, What Is It Called
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." 21 Questions Game, Question Game, Personal Questions, Questions To Ask, Ending A Relationship, Successful Relationships, Bad Temper, Good Morning Image Quotes, Moving In Together
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." Health Issues, Health Problems, Health Care, Cardiovascular System, Circulatory System, John Hopkins, Hormone Disorder, Endocrinologist, 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." Rare Genetic Disorders, Analogy, I Work Hard, Genetics, Medical, The Incredibles, Learning, Simple
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." Dream Pictures, Print Pictures, Wonderful Dream, Beautiful, Bandana, Africa Wildlife, Rainbow Zebra, Animal Rug, 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." Nurse Money, Mental Health Care, Health Administration, New Nurse, Health Policy, Emergency Medicine, Emergency Department
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 Nutrition, You Fitness, Raise Blood Pressure, Lung Conditions, Giving Up Smoking, Ways To Stay Healthy, Ways To Reduce Stress, Cholesterol Levels, Health Goals
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." Asthma Kids, Asthma Remedies, Asthma Relief, Asthma Inhaler, Allergy Asthma, Asthma Symptoms, Asthma Study, Childhood 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. Herbalife, Valley Fever, Diabetes Tipo 1, After Surgery, Influenza, Flu Season, End Of Life, Healthline, Centers For Disease Control
What It Was Like Recovering From a Medically Induced Coma
Hint: It's nothing like what you see on TV.
"I thought all we'd ever share is her gorgeous music and belief in the mighty power of true love. I never thought we would share stiff person syndrome and the warrior spirit to fight for medical relief and attention." Medical Help, Medical Care, Happy 25th Anniversary, Giving Up On Love, My Heart Is Yours, Warrior Spirit, Insidious, I Love You Forever
When You Share the Same Rare Disease as Celine Dion
"I thought all we'd ever share is her gorgeous music and belief in the mighty power of true love. I never thought we would share stiff person syndrome and the warrior spirit to fight for medical relief and attention."
"Their experiences are helping raise awareness for struggles we don't often see in the spotlight.” Ocean’s Eleven, The Big Sick, Robin Roberts, Kristin Chenoweth, Blood Disorder, Facing Challenges, Child Actors
10 Celebrities Who Know What It's Like to Face Rare Disease
"Their experiences are helping raise awareness for struggles we don't often see in the spotlight.”
"I always thought I was just clumsy.” Ehlers Danlos Hypermobility, Elhers Danlos Syndrome, Ehlers Danlos Syndrome Hypermobility, Ehlers Danlos Syndrome Awareness, Hellp Syndrome, Chronic Fatigue, Chronic Illness, Chronic Pain, Ibs Relief
16 Signs You Grew Up With Ehlers-Danlos Syndrome
"I always thought I was just clumsy.”
"I hope we can bring awareness to more people and fight this insidious illness with information." Behcets Disease, Erythema Nodosum, Case Presentation, Rare Disorders, Lower Extremity, Body Joints, Cranial Nerves, Mortality Rate
What New Research on Behçet’s Tells Us About This Rare Disease
"I hope we can bring awareness to more people and fight this insidious illness with information."
"Their experiences are helping raise awareness for struggles we don't often see in the spotlight."
10 Celebrities Who Know What It's Like to Face Rare Disease
"Their experiences are helping raise awareness for struggles we don't often see in the spotlight."
"I thought that surely I didn’t have it." I Kid You Not, How To Start Conversations, Diagnosis
The Road to a Rare But Real Diagnosis
"I thought that surely I didn’t have it."
"Growing up, I knew some people thought I must be making up my symptoms and illness for attention." Emotionally Drained, Medical History, Autoimmune Disease, Hot Mess, Thoughts
I Thought My Rare Disease Diagnosis Would Be Validating
"Growing up, I knew some people thought I must be making up my symptoms and illness for attention."
"I was in my absolute element utilizing my wheelchair and walking stick during the photo shoot." The School Run, Urban Chic Fashion, Mental Attitude, Supportive Friends, Physiotherapist, Neurological Disorders, Award Winning Designer, Modeling Career
How I Coped When a Diagnosis Devastated My Modeling Career
"I was in my absolute element utilizing my wheelchair and walking stick during the photo shoot."
"I should be the one deciding if I would rather have 10 years with a better quality of life. It should be my choice." No One Understands, Pure Products
What It's Like to Face Each Day With Rare Disease
"I should be the one deciding if I would rather have 10 years with a better quality of life. It should be my choice."
“Now we knew what was going on and could do something about it.” Learn more about Katie’s journey with primary immunodeficiency. Sponsored by Takeda Looking For A Girlfriend, Tom Cruise Movies, Baby Pugs, Personal Wellness, Vincent Price, Disabled People
Finding My New ‘Normal’ With Primary Immunodeficiency
“Now we knew what was going on and could do something about it.” Learn more about Katie’s journey with primary immunodeficiency. Sponsored by Takeda
“Now we knew what was going on and could do something about it.” Learn more about Katie’s journey with primary immunodeficiency. Sponsored by Takeda Me Condition, Chronic Condition, Severe Fatigue, Face Health, Order Pizza, People In The Us, Peer Support, Doctor Recommended
Finding My New "Normal" With Primary Immunodeficiency
“Now we knew what was going on and could do something about it.” Learn more about Katie’s journey with primary immunodeficiency. Sponsored by Takeda
“Alpha-1 presented a new challenge in my life — one that, at times, was scary, but I'm thankful to have found a treatment that works for me.” Read Trudy’s story. Sponsored by Takeda Selena Gomez Movies, Outer Banks Style, Wedding Dress Costume, Taylor Swift Hot, Thigh High Boots Heels, Jamie Campbell Bower, What In My Bag, Olivia Newton John, Marilyn Monroe Photos
Knowledge is Power: My Alpha-1 Journey
“Alpha-1 presented a new challenge in my life — one that, at times, was scary, but I'm thankful to have found a treatment that works for me.” Read Trudy’s story. Sponsored by Takeda
Here is my list of the things that have helped me manage my illness. I developed it through trial and error and with the knowledge that the pain of not following the list is far greater than the pain of sticking with it. Natural Calm, Pain Medication, Thing 1, Learning To Be, Finding Peace
9 Ways I Manage Life With Ehlers-Danlos Syndrome
Here is my list of the things that have helped me manage my illness. I developed it through trial and error and with the knowledge that the pain of not following the list is far greater than the pain of sticking with it.
"I have not been feeding tube dependent my entire life, and so many people think that feeding tubes are for babies, young children, and the elderly. That is just simply not the case. Adolescents and young adults tend to get 'lost' in the feeding tube community though." Failure To Thrive, Underweight, Feeding Tube, Life Care, Malnourished
The Myths I Want to Bust as a Young Adult With a Feeding Tube
"I have not been feeding tube dependent my entire life, and so many people think that feeding tubes are for babies, young children, and the elderly. That is just simply not the case. Adolescents and young adults tend to get 'lost' in the feeding tube community though."
We asked our Mighty #chronicillness community to share which blankets keep them warm and #cozy during the winter. These are their recommendations! #staywarm #staymighty Living With Depression, Depression And Anxiety, Mental Wellness, Wellness Tips, Mental Health Conditions
13 Cozy Blankets to Cuddle Up With This Winter
We asked our Mighty #chronicillness community to share which blankets keep them warm and #cozy during the winter. These are their recommendations! #staywarm #staymighty