What Does It Mean to Be 'Rare'? You Told Us.

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We asked our rare disease community this question: What does it mean to be “rare”?

Their answers are heartfelt, eye-opening and important, and will hopefully inspire others to be more compassionate when a loved one or even an acquaintance explains a diagnosis.

Take a look:

1. “When you go to the hospital and the doctor goes, “OK, I’ll be back in a minute.” Fifteen minutes later. ‘I’m sorry had to talk to others doctors because I’ve never heard of it and I do not know how to treat you.’” — Joanna Ramsey

2. “Isolated… All you want is to share your experiences with others, but because it’s so rare, there aren’t many others.” — Samantha Sikorski Raynor

3. “It can make you feel as if you’re an outcast. Most people have no idea what 24/7 exhaustion or being in true pain really feels like. Lucky for them, they’ll never understand.” — Lexi Potter

Black umbrellas with one red umbrella and quote "It can make you feel like you're an outcast."

4. “It makes me feel like my struggles aren’t valid because I have to constantly explain what my disease is and how it affects me. There isn’t the same compassion and understanding with a rare disease as there is with some of the more well-known conditions.” — Amanda Baldassari

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5. “Having a rare disease is a hard thing to live with. It is a constant battle between the outer shell and core of you. It is debilitating physically, physiologically and emotionally. Everyone thinks if you look well on the outside, that must mean you’re OK! In our case, however, it is far from true. What they don’t realize is how hard it was for you go get out of bed in the morning, how hard it was to put pants on, how hard it was to make yourself breakfast and how hard it was to look at yourself in the mirror and put on a fake smile for the world. Many people are unaware of just how many illnesses there are, and they’re quick to blow off illnesses with long names, or names they’ve never heard.” — Tiff Paige Miller

6. “I feel so, so lonely.” — Vicky Wilson

7. “It sometimes makes you feel like others think you’re making it up because when I get asked about my conditions hardly anyone has heard of them — not even doctors sometimes. I always have to explain.” — Katrina Dyer-Davies

8. “To me, being ‘rare’ means frustration. If I need emergency treatment, I can’t just go to the emergency department like everybody else. They have no idea what to do for me and my specialist is 500 miles away. Imagine your house being on fire, and you call 911, and the fireman comes to you and says, ‘Oh, sorry, I’ve never seen a fire before and I can’t put it out for you.’ That is what being rare means to me.” — Kerri Symes

Fire with words "Imagine your house being on fire, and you call 911, and the fireman comes to you and says, 'Oh, sorry, I've never seen a fire before and I can't put it out for you.' That is what being rare means to me."

9. “When you have a rare disease like I do (babesia), the doctors at the hospital have only read about it in the New England Journal of Medicine. They’ve never met anyone with it, they don’t know how to pronounce it or spell it, let alone treat it.” — Chronic Beauty

10.It means doctors dismissing you because they can’t figure out how to help you. It means doctors Googling your condition while you’re in their office. But it also means that when you find others with the same condition, you can empathize with everything they are going through.” — Sasha Nelson

11. “Having a rare form of a non-rare disease is weird. Really, really weird.” — Ellie Jean B

12.It’s trying to find a balance between knowing my condition (mast cell disease) and body better than the doctors I’m going to see, but still needing their input because they know the medicine. It’s trying to reach that mutual understanding that they know the science but only get a snapshot of our daily lives, and we know our bodies better than they ever will.” — Kylene Boka

13. “To me, rare means not having treatments to help you live a ‘typical’ life.” — Alicia Estadt

14. “You feel constantly dismissed. Doctors do not know how to treat or diagnose you. Friends think you are faking it. Everyone you know is a ‘doctor’ and tells you what you should do to be cured.” — Hanna Danielle Stutts

15. “I feel lucky. Lucky to be able to share my experiences with others who are struggling with rarity and uniqueness. I’m also lucky to have such rare and interesting people in my corner as well!” — Lindsay Livingston

16. “I feel like I am carrying the weight of the world on my shoulders every single day. Between advocating on behalf of myself and my kids, providing ‘continuing educating’ for providers in the medical field who are unaware of our conditions, playing secretary/concierge trying to get all the appointments scheduled and calling specialists on a consistent basis to see if there have been any cancelations or remembering to request refills and/or authorizations for prescriptions, and being a patient, it can be too much to handle. It feels like quicksand, but I have to keep fighting because who else will?” — Christy Sumner Rue

sand with words "It feels like quicksand but I have to keep fighting because who else will?"

17. “It makes me feel like a freak show.” — Rebecca Walz

18. “It usually feels itchy, painful, sometimes scary and sometimes isolating. And others can make me feel unheard, doubted and judged. But on days like today I’m reminded how far I’ve come since finding a doctor who listens, cares and works hard to help me feel better, and friends who can relate. I don’t feel so weird or alone! I feel grateful.” — Sean-Michael Gettys

19. “It makes me feel like a guinea pig or a science experiment since being rare equals less funding for treatment.” — Christina Schulz

20. “It makes me feel like a broken record. I’m constantly having to repeat my entire medical history to people (let’s give it a low estimate…) about eight times per doctor’s appointment.” — Katie Taafe

broken record with word "It makes me feel like a broken record."

21. “It feels like you’ll never get the help you’re so desperately seeking because nobody seems to understand and there’s usually no cure and little treatment.” — Shana Romancheck

22. “It can be lonely and isolating to have a rare disease. Using social media to connect to people in a similar situation all over the world helps.” — Jason Heather Tanner

23. “It makes you incredibly self-conscious. It allows people to discredit you and judge you. Then on the other hand it thickens your skin and really builds your strength.” — Ali Mygrants

24. “Certain government services try to pretend I don’t exist. I don’t fit into their categories, so either I’m lying, I’m deluded or I don’t deserve their help.” — Felicity Smith

25. “It is not nice being one in a million. It is not special. It is frustrating, depressing and extremely tiring. And I have yet to meet someone nearby who truly understands. No, it’s not special being one in a million; it’s lonely.” — Karen Taylor

white chairs with one red chair and words "It is not nice being one in a million."

26. “The stigma and ignorance I encounter on a regular basis is exhausting.” — Syrena Clark

27. “Doctors don’t believe I’m in pain, and friends think I’m a hypochondriac.” — Calliope Krystal Pia Kilplainen

28. “I have to pretend to be someone I’m not or I won’t have have anything in common with anyone.” — Malin Cronborn

29. “Being rare means I’m usually a guinea pig for doctors, procedures, treatments and medications. It means knowing that most of the time, the things we try to stop the progression of my disease won’t work. But it also means fighting for a life in spite of that knowledge. Being rare also gives us the unusual opportunity to educate people around us in hopes that, one day, we won’t be quite so unheard of anymore.” — Christina Ebersohl

One bird flies away from the flock with words "Being rare also gives us the unusual opportunity to educate people around us in hopes that, one day, we won't be quite so unheard of anymore."

Do you have a rare condition? What does being “rare’ mean to you? Let us know in the comments below.

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What It Means to Be One of the ‘Rarities’

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Happy Rare Disease Day! Please wear jeans today to raise awareness.

Because I can’t. I cannot fit in any of my jeans at the moment, thanks to Prednisone. Even if I could fit, it’s unclear if my skin would tolerate it. Yes, I am now “allergic” to many of my clothes.

On my first post-diagnosis Rare Disease Day, this is what it means to me to be one of the rarities:

I am a guinea pig. It is scary, isolating and frustrating.

I am a research participant in pioneer studies that are underfunded, primarily with philanthropy.

I don’t have adequate medical care. It’s typical to wait three to six months to see a doctor who understands my disease. And money always is a factor.

keeya steel

I carry emergency protocol with me at all times because most emergency rooms are unfamiliar with my disease and how to treat the life-threatening reactions it causes.

I am one of the lucky ones. I have a diagnosis. I am fortunate to have ping-ponged my way to a world-renowned specialist after decades of suffering. My diagnosis unlocked years of validation.

Today is hard and tomorrow will be hard. Every day, I try to adjust to this purgatory, as I wait for better understanding of the disease and treatments.

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However, I have hope that someday it will get a little easier. In the meantime, I am thankful for the support I receive at home and through the rare disease community.

Follow this journey on Hell’s Bells and Mast Cells.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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16 Reasons You Should Pay Attention to Rare Disease Day

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Do you know someone living with a rare disease? Seeing as approximately 30 million Americans have one of the 7,000 diseases considered “rare,” odds are, you do.

With so many individuals and families affected by rare diseases, you might imagine an abundance of medical resources and support communities exist, but it’s quite the opposite. The National Organization for Rare Disorders (NORD) reports that for most rare medical conditions, no cures and few proven treatments are available, and many people affected by rare diseases have revealed they feel alone and struggle to explain to others what they’re going through.

Rare Disease Day is held on the last day of February every year to raise awareness, and this year, The Mighty teamed up with NORD to ask our Facebook communities what those 24 hours mean to them. Here’s what they had to say:

1. “Rare Disease Day is a day I feel acknowledged.” —Asdruval Melissa Cifuentes

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2. “A chance that just one more person will become aware of adrenal insufficiency, which means one more person may help save my life.” —Lisa Anderson

3. “Rare Disease Day is a day where people can see this and realize the hardship of fighting something you know nothing about.” —Sumathy Lal

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4. “A time [for] the parents who search for answers to the unknown.” —Diane Anderson

5. “Hope.” —DeAnna Wry

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6. “A day where the world stops and listens to what the rare community has to say … It’s our chance to create huge awareness and to show that having a rare disease is not that rare.” —Geraldine Renton

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7. “It means showing that statistics aren’t always right.” —Lizzie Dicamillo

8. “Rare Disease Day means advocating for my children.” —Olivia Howard

9. “It means appreciating and acknowledging the rare disorder(s) that make me, me.” —Keira Baccei

10. “Rare Disease Day for me is every day! It is just every minute of every day and pushing through ’til the next minute the next day… the next week, month, year, and to just hold on to hope!” —Mellonie Swinford

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11. “Rare Disease Day means one day where no matter what the numbers say, no matter how much I may be struggling, no matter how helpless those around me might feel, I am not alone.” —Amanda Leslie

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12. “Sadness… since Margarita Day or Pizza Day will have more shares than Rare Disease Day. Sadness, that it takes having a rare disease or having someone close to you with a rare disease to even know this day exists.” —Suzanne Depaolis

13. “Separately each rare disease and their supporters are small in numbers, but together we are a large group of strong and mighty advocates.” —Amanda Buck

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14. “One day, there will be a cure for all of us and no one will have to suffer.” — Meghan Bayer

15. “Rare Disease Day gave me the courage to share my story on Facebook, to put it out there to people who may have never have known of MMN [multifocal motor neuropathy].” —Brenda Weisbrod Perales

16. “Rare Disease Day means my child becoming part of a larger community of voices showing how beautiful rare is.”—Miriam Gwynne

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What does Rare Disease Day mean to you? Let us know in the comments below.

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Why I Want You to Wear Jeans on February 29

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My name is Sabrina. I’m 21 years old. I’m a dancer. I’m a giver. I’m an advocate. I love fiercely and relentlessly. You tell me I can’t, and I’ll show you I can. I’m a future pediatric oncology nurse. And though you may not know it just by looking at me, my body is constantly at war with itself due to multiple rare chronic diseases that affect my organs and organ systems.

Each day may be filled with pain, nausea, vomiting, rashes, swelling and everything in between, but it is also filled with love, determination and prayer. Don’t get me wrong: Yes, I have these illnesses, but I will never confuse what I have with what I am — because I am so much more than the conditions that plague my body. My illnesses have tried to take so much from me, and at times they’ve been successful. I’ve lost the ability to eat, sleep and enjoy certain foods and activities, but so much beauty still remains.

girl smiling in hospital bed
Sabrina in a hospital bed.

On February 29, 2016, a community built of chronic illness fighters and those who love them will celebrate a day known as Rare Disease Day. You may think we are a small group, but I can assure you we’re not. I can promise you though these diseases are “rare,” the amount of people who fight them is great. Each of you may have someone in your life who is plagued by a rare disease. You may not even know it. “But you don’t look sick!” “You’re too young to be so ill.” “I haven’t heard of that.” If only I had a dollar for every time I heard comments like that — and two dollars for every time I heard it from a medical professional.

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I have lost count of the days I have plastered a smile on my face despite the indescribable pain I felt raging in my body. I couldn’t tell you how many times I got sick in the bathroom but still went to class without a word. Many people will never see all the medications, planning, tubes and machines that are required just to get me out of bed some days. Most days you would never know my body is failing, that it is fighting — and that’s the way invisible illness works. For some reason the world tends to be more compassionate towards the illnesses they are able to see. Something about that makes it more believable. I can promise you my fight is every bit as grueling as any other illness can be. The pain I feel as a result of one of my conditions has been said to be even greater than childbirth.

My friends and I who fight these monstrous diseases do so with grace. We raise awareness for Rare Disease Day — not for pity or sympathy, but for compassion and understanding. To ask you to be kind and compassionate to everyone you meet, for they may be fighting a battle you know nothing about. We ask that medical professionals be mindful that though these diseases are rare, they do exist. Remember, even if it trots like a horse and looks like a horse, there’s a possibility it could be a zebra.

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Sabrina raising awareness for Rare Disease Day.

However, it’s most important to us that we are able to let those fighting these illnesses know that no matter how rare their disease, they are never alone. We have all been there. We have all sat in a doctor’s office and cried out of hopelessness and desperation. We have all felt like we didn’t quite “fit” anywhere. Rare Disease Day acts as the foundation of a brighter future. It is building an infrastructure of hope that can rid this world of every stigma and negative connotation that comes from rare invisible illnesses. It is a prerequisite to a future where no one has to feel alone because of the illnesses they have.

So on February 29, please join me in supporting all of those who are fighting, have fought and will fight a rare disease. I encourage you to wear your favorite pair of jeans to remind people that regardless of what condition you face, we all have hope in our genes.

Follow this journey on #SimplySabrina.

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Please Stop Saying ‘At Least It’s Not Cancer'

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As a young bride barely off her honeymoon, I was diagnosed with a rare illness and told I would be lucky to see the age of 30. My disease quickly took essential functions I never realized were a true privilege. Eating — biting into a delicious, juicy cheeseburger — abruptly become impossible. Now I had a tube. Breathing, simply walking and talking to an acquaintance, became unfeasible. Now I had a tank. My months suddenly consisted of 16-plus doctor’s appointments and a bombardment of constant procedures — just to stay alive. Chemotherapy wracked my fragile body every month in an attempt to destroy my malfunctioning immune system, which believed my crucial organs, blood vessels and skin were foreign invaders. In an instant, it felt like my life, my husband’s life and my family’s life were destroyed.

Yet, through this unbelievable grief, pain and struggle, those around me seem to believe my illness, the fatal illness that seized my body and destroyed the quality of life I had left to live, was somehow less tasking than another.

“At least it’s not cancer.”

While many individuals are genuinely trying to be supportive by saying this phrase, it comes off as anything but. The statement can bring on genuine emotional distress to those enduring rare illness, making them feel as though their anguish isn’t important. Stating that one’s disease is less distressing than another is not only unhelpful to a patient’s situation, but extremely prejudiced. The phrase is frequently based not on facts regarding both illnesses, but on one’s general understanding that cancer is deadly and its treatment is harsh. With media attention focused heavily on the devastation of cancer, I believe society has no idea how life-altering and fatal other diseases can be — because they don’t know about them.

Comparing diseases is a disrespectful habit many people do not even realize they have formed. Many illnesses, such as systemic sclerosiswhich I suffer from, are rare. There is a lack of knowledge regarding their severity and detriment to the body. While you may never have heard of this illness, it does not mean I am better off than if I were to be suffering from cancer. The truth of the matter is — many diseases can destroy lives.

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Please be aware that I am not writing in an attempt to sway readers that one disease is worse than another — I’m writing to show the similarities that rare illness and cancer patients share. Hopefully, this awareness can bring about a positive change in the way we support all individuals fighting disease. Let’s look at a few of the similarities between cancer and my illness, systemic sclerosis:

1. Both diseases, depending on the severity or form, can severely limit a patient’s quality of life. Both can strip away a person’s basic human functions, such as breathing and eating, as well as their mobility, appearance, independence, social life, business life and financial stability. Many rely on medical equipment like oxygen tanks, central lines and feeding tubes, as well as an overwhelming amount of medication and skilled physician care.

2. As in cancer, many systemic sclerosis patients can undergo intensive chemotherapy and even stem cell and bone marrow transplants. They might lose their hair, their fertility, spend countless hours vomiting, and experience other horrendous side effects from these treatments, including death.

3. Many people have been affected by cancer mortality in some way, whether it be a loved one, a friend or a coworker. You may know someone who has passed away due to cancer. Systemic sclerosis, and rare illnesses like it, can also be life-threatening. Many patients might face a short prognosis upon diagnosis.

The reality is, both diseases have different stages, and forms, leaving some patients a prosperous prognosis and others a poor prognosis. A patient’s quality of life, their treatments plans, and overall outcome varies greatly depending on the organs affected in both cancer and rare illness.

Please recognize that comparing one’s illness to another is not an appropriate way to console a suffering individual. Would you ever express to a cancer patient, “At least it’s not ________”? More than likely the answer is no, so 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.

Editor’s note: This story replaced a previous version that omitted some details. See the full post on Chanel’s blog, The Tube-Fed Wife.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Want You to Ask Me About My Child's Rare Disease

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When your child has a rare disease, it can be isolating. People may be afraid to ask questions and even back away from you. There are times when you’re sitting next to your child’s bed in yet another hospital room, seeing your child ill, in a lot of pain and waiting on an answer from doctors who don’t understand the condition well — and you feel like you want to scream. It’s like the world is carrying on around you, and you’re stuck in a big dark hole trying to climb out and getting nowhere.

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Kayleigh’s son, Rylan.

It’s OK to ask for answers about a disease your don’t understand or haven’t even heard of. It’s OK to learn about what our lives are like on a day-to-day basis. What’s not OK, I feel, is to stare at my son when his jaundice appears, or say things like “He’ll grow out of it,” “It’s OK, could be cancer,” or “He looks OK to me!”

If you don’t know about his rare disease, how can you possibly understand what it is like, and how can you comment on it? Every day it’s a challenge to keep him healthy, to protect him from infections and viruses. I watch him like a hawk, ready for that next dash to the hospital when his hemoglobin levels drop rapidly again. I worry about dropping him off at preschool and leaving him. I worry a simple childhood illness could land him in the hospital, or worse, in a coma.

We find the best support in other parents with chronically ill children, as we understand what it is like. If we all keep encouraging people to ask questions and talk about our experiences, then one day maybe these diseases won’t be so unknown. We would like to be asked what his disorder entails, how it affects his everyday life, what we have to do to keep him healthy. Education is key with a rare disease, and the more people know and understand, the more of a chance he has for better care in hospitals and better appreciation of what we go through as a family. I am in the process of raising awareness, and the more people ask questions, the better.

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