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Rare Disease

Stories and health tips from people living with rare disease or undiagnosed conditions.
·
249 Pins
 1w
Collection by
The Mighty
Similar ideas popular now
Chronic Illness
Invisible Illness
Health
"Their experiences are helping raise awareness for struggles we don't often see in the spotlight.”
"Their experiences are helping raise awareness for struggles we don't often see in the spotlight.”
The Mighty
The Mighty
Rare Disease
"I always thought I was just clumsy.” Ehlers Danlos Syndrome Symptoms, Ehlers Danlos Hypermobility, Elhers Danlos Syndrome, Chronic Illness, Chronic Pain, Fibromyalgia, Chronic Fatigue, Post Viral Fatigue, Ibs Relief
Ehlers Danlos Syndrome Symptoms
Ehlers Danlos Hypermobility
Elhers Danlos Syndrome
Chronic Illness
Chronic Pain
Fibromyalgia
Chronic Fatigue
Post Viral Fatigue
Ibs Relief
"I always thought I was just clumsy.”
The Mighty
The Mighty
Rare Disease
"I hope we can bring awareness to more people and fight this insidious illness with information." Erythema Nodosum, Case Presentation, Rare Disorders, Lower Extremity, Body Joints, Cranial Nerves, Mortality Rate, Remission, Nsaids
Erythema Nodosum
Case Presentation
Rare Disorders
Lower Extremity
Body Joints
Cranial Nerves
Mortality Rate
Remission
Nsaids
"I hope we can bring awareness to more people and fight this insidious illness with information."
The Mighty
The Mighty
Rare Disease
"Their experiences are helping raise awareness for struggles we don't often see in the spotlight." Ocean’s Eleven, The Big Sick, Robin Roberts, Facing Challenges, Rare Disease, Jimmy Kimmel, Child Actors, Good Morning America, George Clooney
Ocean’s Eleven
The Big Sick
Robin Roberts
Facing Challenges
Rare Disease
Jimmy Kimmel
Child Actors
Good Morning America
George Clooney
"Their experiences are helping raise awareness for struggles we don't often see in the spotlight."
The Mighty
The Mighty
Rare Disease
"I thought that surely I didn’t have it." I Kid You Not, How To Start Conversations, Health Issues, Diagnosis
I Kid You Not
How To Start Conversations
Health Issues
Diagnosis
"I thought that surely I didn’t have it."
The Mighty
The Mighty
Rare Disease
"Growing up, I knew some people thought I must be making up my symptoms and illness for attention." Emotionally Drained, Pity Party, Lifelong Friends, Medical History, Autoimmune Disease
Emotionally Drained
Pity Party
Lifelong Friends
Medical History
Autoimmune Disease
"Growing up, I knew some people thought I must be making up my symptoms and illness for attention."
The Mighty
The Mighty
Rare Disease
"I was in my absolute element utilizing my wheelchair and walking stick during the photo shoot." Mri Scan, Urban Chic Fashion, Single Mum, The School Run, Supportive Friends, Physiotherapist, Neurological Disorders, Carer
Mri Scan
Urban Chic Fashion
Single Mum
The School Run
Supportive Friends
Physiotherapist
Neurological Disorders
Carer
"I was in my absolute element utilizing my wheelchair and walking stick during the photo shoot."
The Mighty
The Mighty
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." Grant Money, No One Understands, Much Music, Each Day, 10 Years, Pure Products, Shit Happens
Grant Money
No One Understands
Much Music
Each Day
10 Years
Pure Products
Shit Happens
"I should be the one deciding if I would rather have 10 years with a better quality of life. It should be my choice."
The Mighty
The Mighty
Rare Disease
“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, Personal Wellness, Baby Pugs, Vincent Price, Disabled People, Catherine Deneuve
Looking For A Girlfriend
Personal Wellness
Baby Pugs
Vincent Price
Disabled People
Catherine Deneuve
“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
The Mighty
The Mighty
Rare Disease
“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 Face Health, Order Pizza, People In The Us, Peer Support, Autoimmune Disorder, Immunology, Sick Kids
Face Health
Order Pizza
People In The Us
Peer Support
Autoimmune Disorder
Immunology
Sick Kids
“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
The Mighty
The Mighty
Rare Disease
“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, Joe Keery, Olivia Newton John, Marilyn Monroe Photos
Selena Gomez Movies
Outer Banks Style
Wedding Dress Costume
Taylor Swift Hot
Thigh High Boots Heels
Jamie Campbell Bower
Joe Keery
Olivia Newton John
Marilyn Monroe Photos
“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
The Mighty
The Mighty
Rare Disease
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, Ehlers Danlos Syndrome, Pain Medication, Learning To Be, Finding Peace, Dignity
Natural Calm
Ehlers Danlos Syndrome
Pain Medication
Learning To Be
Finding Peace
Dignity
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." Silly Names, Failure To Thrive, Underweight, Feeding Tube, Life Care
Silly Names
Failure To Thrive
Underweight
Feeding Tube
Life Care
"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 Mental Wellness, Wellness Tips, Living With Depression, Mental Health Conditions
Mental Wellness
Wellness Tips
Living With Depression
Mental Health Conditions
We asked our Mighty #chronicillness community to share which blankets keep them warm and #cozy during the winter. These are their recommendations! #staywarm #staymighty
"I'm not looking for someone to tell me what I want to hear, I'm looking for someone with answers I desperately need." We Dont Talk, Hard Part, Looking For Someone, Health Conditions
We Dont Talk
Hard Part
Looking For Someone
Health Conditions
"I'm not looking for someone to tell me what I want to hear, I'm looking for someone with answers I desperately need."
We asked our Mighty disability and chronic illness communities which service dog-related products they found most useful and/or fun. Here are their recommendations. Service Dogs Gear
Service Dogs Gear
We asked our Mighty disability and chronic illness communities which service dog-related products they found most useful and/or fun. Here are their recommendations.
🎁 The holidays are a great time to begin or expand your smart home, as many devices go on sale. If you’re shopping for a loved one who has a disability, why not buy them life-changing technology like a smart light bulb or video doorbell instead of a new sweater? 👉 This guide can help you choose the right smart home device for yourself or someone with a disability in your life: https://bit.ly/3GzRP6n. #holidays #giftguides #giftideas #chronicillness #disability Guided Meditation For Anxiety, Stress Relief Meditation, Best Stress Relief, Disability Awareness
Guided Meditation For Anxiety
Stress Relief Meditation
Best Stress Relief
Disability Awareness
🎁 The holidays are a great time to begin or expand your smart home, as many devices go on sale. If you’re shopping for a loved one who has a disability, why not buy them life-changing technology like a smart light bulb or video doorbell instead of a new sweater? 👉 This guide can help you choose the right smart home device for yourself or someone with a disability in your life: https://bit.ly/3GzRP6n. #holidays #giftguides #giftideas #chronicillness #disability
"Watching your child get diagnosed with a health condition and adjusting to the new realities of life with a child with a medical condition can feel overwhelming and frightening. If your child just received a diagnosis, you may worry about what the future holds or seek out a sense of hope that everything will be OK. Here are five gentle reminders for anyone whose child was just diagnosed with a disability or chronic illness: https://bit.ly/3n751aH." Emotional Weight, Everything Will Be Ok, Muscular Dystrophies, Reality Of Life, Conduction
Emotional Weight
Everything Will Be Ok
Muscular Dystrophies
Reality Of Life
Conduction
"Watching your child get diagnosed with a health condition and adjusting to the new realities of life with a child with a medical condition can feel overwhelming and frightening. If your child just received a diagnosis, you may worry about what the future holds or seek out a sense of hope that everything will be OK. Here are five gentle reminders for anyone whose child was just diagnosed with a disability or chronic illness: https://bit.ly/3n751aH."
We asked The Mighty community which products they use to make their time in the kitchen easier. Here are their recommendations. Down Syndrome People
Down Syndrome People
We asked The Mighty community which products they use to make their time in the kitchen easier. Here are their recommendations.
“Although this journey with Hereditary Angioedema (HAE) hasn’t been an easy one, I’m happy we no longer live with so much fear, and can focus on what’s really important: living our lives and spending time with each other.” - Lesa M. Sponsored by Takeda Pharmaceuticals Caregiver Support, Hereditary, Happy We, Genetics, Stomach, Health Tips, Cancer
Caregiver Support
Hereditary
Happy We
Genetics
Stomach
Health Tips
Cancer
“Although this journey with Hereditary Angioedema (HAE) hasn’t been an easy one, I’m happy we no longer live with so much fear, and can focus on what’s really important: living our lives and spending time with each other.” - Lesa M. Sponsored by Takeda Pharmaceuticals
The Mighty
The Mighty
Rare Disease