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Rare Disease

Stories and health tips from people living with rare disease or undiagnosed conditions.

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Chronic Illness

Invisible Illness

"I was in my absolute element utilizing my wheelchair and walking stick during the photo shoot."

"I was in my absolute element utilizing my wheelchair and walking stick during the photo shoot."

The Mighty

"I should be the one deciding if I would rather have 10 years with a better quality of life. It should be my choice."

"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

“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, Peer Support, Autoimmune Disorder, Immunology, Sick Kids, Chronic Condition

Autoimmune Disorder

Chronic Condition

“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

“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, Taylor Swift Hot, Cameron Monaghan, Thigh High Boots Heels, Jamie Campbell Bower, Joe Keery, Olivia Newton John

Selena Gomez Movies

Outer Banks Style

Taylor Swift Hot

Cameron Monaghan

Thigh High Boots Heels

Jamie Campbell Bower

Olivia Newton John

“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

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

Ehlers Danlos Syndrome

Pain Medication

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

Failure To Thrive

"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

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." Spoonie Life, We Dont Talk, Hard Part, Looking For Someone, Autoimmune Disease

Looking For Someone

Autoimmune Disease

"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, Health Issues, Chronic Fatigue, Spoonie Gifts

Guided Meditation For Anxiety

Stress Relief Meditation

Chronic Fatigue

🎁 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

"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, Disability Awareness

Down Syndrome People

Disability Awareness

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

“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

“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

“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

Learn more about kidney stones and get tips on how to manage them by visiting our PH1 Support group. #mightytogether #staymighty Kidney Stones, Health Conditions, Support Group

Health Conditions

Learn more about kidney stones and get tips on how to manage them by visiting our PH1 Support group. #mightytogether #staymighty

"As a 27-year-old who has lived with fibromyalgia for five years now, here are three things I would like you to know to debunk those myths..." Read the full story on The Mighty 👉https://bit.ly/3DUtKpp.

"As a 27-year-old who has lived with fibromyalgia for five years now, here are three things I would like you to know to debunk those myths..." Read the full story on The Mighty 👉https://bit.ly/3DUtKpp.

🗣 "At my first chemotherapy appointment, I wasn’t expecting such a reality check. I’d been diagnosed with cancer for four weeks at that point, but I don’t think it really hit me until that moment. I have cancer. And it’s a type of cancer I’ll need to deal with my entire life. The realization hit me like a truck." 👉 Read the complete story on The Mighty here: https://bit.ly/3vzu1Lu I Wish You Well, Best Stress Relief, Bad Thoughts

I Wish You Well

Best Stress Relief

🗣 "At my first chemotherapy appointment, I wasn’t expecting such a reality check. I’d been diagnosed with cancer for four weeks at that point, but I don’t think it really hit me until that moment. I have cancer. And it’s a type of cancer I’ll need to deal with my entire life. The realization hit me like a truck." 👉 Read the complete story on The Mighty here: https://bit.ly/3vzu1Lu

"My prognosis is good. Lymphoma at 26 is unlikely to kill me. But still, it’s hard. And not just for typical reasons, like chemotherapy or nausea, but for other reasons as well. Here’s everything I wasn’t prepared for when I got diagnosed with cancer..." 📌 Read the full story on The Mighty: https://bit.ly/3lYETzy. Chemo Side Effects, Lymphoma

Chemo Side Effects

"My prognosis is good. Lymphoma at 26 is unlikely to kill me. But still, it’s hard. And not just for typical reasons, like chemotherapy or nausea, but for other reasons as well. Here’s everything I wasn’t prepared for when I got diagnosed with cancer..." 📌 Read the full story on The Mighty: https://bit.ly/3lYETzy.

"Invisible disabilities often fly under the radar — both in name and in everyday life. Symptoms of invisible health conditions are often so hidden that the challenges of living with an invisible disability can often be frustrating and completely unexpected. Here are five of the most well-kept secrets of my life with an invisible disability — finally revealed." 📌 Full story on The Mighty: https://bit.ly/3ndNgGR.

"Invisible disabilities often fly under the radar — both in name and in everyday life. Symptoms of invisible health conditions are often so hidden that the challenges of living with an invisible disability can often be frustrating and completely unexpected. Here are five of the most well-kept secrets of my life with an invisible disability — finally revealed." 📌 Full story on The Mighty: https://bit.ly/3ndNgGR.

"This First Alert system, while it makes me uneasy at times just to have, I also feel lucky that there are these devices that can save my life if in the event of an episode. I want to live a long life and there is technology, now, that can facilitate these desires. It’s also comforting knowing I have a tool to use in a crisis." 📌 Check out the full story on The Mighty here: https://bit.ly/3EcbnfZ Challenge Me, Save My Life

"This First Alert system, while it makes me uneasy at times just to have, I also feel lucky that there are these devices that can save my life if in the event of an episode. I want to live a long life and there is technology, now, that can facilitate these desires. It’s also comforting knowing I have a tool to use in a crisis." 📌 Check out the full story on The Mighty here: https://bit.ly/3EcbnfZ

Ehlers Danlos Syndrome Symptoms, Skin Symptoms, Dysautonomia Pots, Hypermobility, Muscle Weakness

Ehlers Danlos Syndrome Symptoms

Dysautonomia Pots

Muscle Weakness

The Hardest Parts of Having a Rare Disease #raredisease Endometriosis, Cidp, Amyotrophic Lateral Sclerosis, Spoon Theory, Complex Regional Pain Syndrome, Mthfr

Amyotrophic Lateral Sclerosis

Complex Regional Pain Syndrome

The Hardest Parts of Having a Rare Disease #raredisease

23 Shoe Brands People With Ehlers-Danlos Syndrome Recommend #eds #chronicillness Invisible Illness, Shopping Lists

Invisible Illness

23 Shoe Brands People With Ehlers-Danlos Syndrome Recommend #eds #chronicillness

30 Unexpected Coping Techniques That Help People Manage Ehlers-Danlos Syndrome #eds #chronicillness Helping People

30 Unexpected Coping Techniques That Help People Manage Ehlers-Danlos Syndrome #eds #chronicillness