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8 Things I Wish I Knew When My Child Was Diagnosed With a Rare Disorder

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In less than two weeks, we will be celebrating the one-year anniversary of our daughter’s diagnosis day. When she was 8 weeks old, after a month of being officially diagnosed with epilepsy, we learned the cause of her seizures was due to a genetic mutation known as CDKL5 (a rare genetic disorder that results in difficult to control early onset seizures and severe to profound developmental delays). In honor of this day, I would like to share a list of the eight things I wish I knew when my daughter was initially diagnosed with a rare disorder.

1. You will need time to grieve.

Grief is not solely reserved for those who have physically buried a child. While you have not lost your child to death, you have lost the “healthy child” you anticipated you would have. It takes time to come fully to terms with your child’s diagnosis. Do not rush the process. Even a year after the diagnosis, there are still days that result in grief. Grief over the past, grief over the present and grief over the future life your child may lead. Grief comes in waves and you should not expect to just “get over it.” It is OK. Allow yourself time to grieve over the expectations you had prior to the “finality” of the diagnosis.

2. Do not be consumed by your grief.

While it is more than appropriate to grieve, it is important not to let that grief overshadow the physical presence of your child. You never know how long your child will be here on this earth and you don’t want to waste your precious time with him/her missing out on the joys of parenthood that do exist. Live each day with as close to zero regrets as possible, so if God forbid you have to say goodbye sooner than you anticipated, you will not look back and say, “I wish I…”

3. Having your child receive his/her diagnosis at an early age will not necessarily change the outcome. 

baby sitting in car seat on the floor
Randi’s daughter sitting in her car seat.

Not everyone is “fortunate” enough to have his or her child diagnosed when he/she is 8 weeks old. We thought for sure that our daughter being the youngest child diagnosed with CDKL5 would mean that she would surpass the other children in the ages she would attain developmental milestones. We thought since we had so many parents giving us advice regarding what they would have done had their child received their diagnosis early, that our daughter would be able to accomplish more and avoid more of the hurdles. In the end, you can be as “prepared” as humanly possible, you can think you can outsmart the disorder, but when your child has a rare disorder, the rare disorder will still run its course.

4. Having a diagnosis will give you closure in one sense, but will also leave you with doubts regarding the future.

You will hear many times that “At least you know,” or “You are so lucky your child was diagnosed at such a young age.” This is true on one hand, as you have a support group available, you have a “projected route for your child’s journey”, and now all the symptoms your child displays make sense. On the other hand, you are seeing first-hand the ugly side of the diagnosis. You will witness the struggles that potentially lie in your child’s future. You will see babies and young children die along the way. You are seeing a glimpse into the potential life your child will lead. You can no longer hide yourself from the facts. You are no longer able to be blissfully ignorant. This can leave you feeling sad and defeated. It is OK. Take it all in and know that every child is different. Your child will write his or her own story and follow her own path. Just follow their lead.

5. You are not a failure.

There will come times following your child’s diagnosis that you will look at other children and see their accomplishments and feel like it is your fault your child has not accomplished the same milestones. All children develop individually at their own speed and have their own unique strengths. What your child can and cannot do is not a reflection of how much time, energy, effort and love you are pouring into your child.

6. Do not judge the parents who have older children with your child’s diagnosis. 

When you look at children who are older with the same diagnosis as your child, your thoughts may wander to, “Well, if they knew early on, then they would have been able to do this and that by now.” You may think enrolling your child in every therapy imaginable will make all the difference. Keep in mind that all those children were babies themselves and their parents did what you are doing now, and they will always do right by their child as you will do for yours. Just because you do not see their child meeting milestones does not mean these parents are not working with their child every day.

7. Lean on the parents of other children with your child’s diagnosis for support and guidance. They will be your best tool.

If you are as lucky as we have been to have an amazingly active and supportive online community that has children with your child’s diagnosis, become part of it. Immerse yourself, make friends and get to know the other children and parents. They will be there in your time of need. They get it. They will lift you up when you are down, they will sing praises when your child excels. No one knows what you are going through better than fellow parents. No matter what part of the journey each parent is on, each mom and dad will welcome you into their lives as if you are family, because you now are.

8. Trust your parenting gut.

You will spend a lot of time in and out of doctors’ offices and hospitals. You will find professionals who have your child’s best interest at heart and others who will not. Regardless, no one is a better judge of what is going on with your child than you! Trust your intuition and trust your knowledge. You know more about your child than any doctor does. Always go with your gut!

Follow this journey on Sonya’s Story or on Facebook.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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3 Things I Want to Tell the Mom Receiving a Rare Diagnosis

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Today may feel like the hardest day of your life. Whether or not motherhood is something you planned and dreamed about, you likely fantasized about the life of the person you carried inside of you. Would she look like me and have red hair, enjoy gymnastics and cheerleading, have a great sense of humor, and/or become the first female president?

Whatever it is you imagined for your child, it probably was not a rare disease. Disease, struggle, and/or early death is not something anyone wants for their child.

little girl on grass with walker
Glenda’s daughter at her school’s Easter egg hunt.

1. It is OK to mourn the health and life you wanted for your child.

Doing so does not mean you love your child any less or make the statement that you don’t want a child with a disability. Of course you want your child to live a long, healthy life with as little struggle as possible. It is natural to grieve the life you wanted for your child and to do so unapologetically.

2. As this grief lessens, you will imagine a new life with your child.

My daughter is constantly inspiring me with her determination, strength and perseverance. I cannot even begin to imagine what is in store for her because she is my teacher. Before this diagnosis, I naturally viewed everything from my worldview; now I have the opportunity to see it from her perspective. She does not seem to feel sad or angry or disappointed about her disease. This is her life and the only life she knows. Allow your child to show you that a well-lived life isn’t always the way you imagined it.

3. Don’t let anyone define your child.

People will put your child in a box because that’s how information gets organized. Encourage others to think outside that box. It’s easy to put a label on somebody and file them away with other “stuff” we don’t understand. Your child deserves better, and if you don’t advocate for them then nobody will do it for you. Just as your child taught you your new worldview, share your new perspective with others.

little girl in white dress smiling
Glenda’s daughter.

Follow this journey on Hope for Katherine Belle.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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Dear Doctors: Please Don’t Call Our Daughter One of 'Those Kids'

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Nearly a year ago, my husband and I were the happiest expecting parents ever. We were taking pictures of my huge baby belly shortly before contractions started and we had to head to the hospital. When I look at these pictures, I remember exactly how I felt, and I know that the smile on my face was from the very bottom of my heart. We were blissfully unaware that our lives were about to be turned upside-down.

Sanaa, her husband, and daughter Mia pose with a bouquet of flowers.
Sanaa, her husband, and daughter Mia

Our baby girl was born with an extremely rare syndrome affecting her eyes, heart and skeleton. Since her birth we’ve lived in hospitals, spent endless hours in specialists’ waiting rooms, and learned more medical jargon than we’ve ever thought we would.

We are extremely grateful to the health care professionals involved in our daughter’s care. Our baby was born blind and surgeons made her little eyes shine. They allowed our little girl to see the world, and for that we’ll be eternally grateful. We are also grateful to the kind nurses who took care of her, and sometimes us, after each surgery. We are also grateful to the amazing therapists who are going with us along the way and allowing our baby girl to develop amazingly well despite hospital stays and endless treatments.

Nevertheless, there’s one thing I’d like the health care professionals to know: Please be mindful of the words you use. Your words have a bigger impact than you know.

I recently left a specialist’s office feeling sad. It was a routine checkup, and I had no reason to feel the way I felt. I had to question my own feelings to realize that it was because of the words he used to talk about my baby. He explained that “these kids often have poor appetite.” I felt a sudden urge to come back to his office just to ask him: Which kids were you referring to? Did you mean the cute baby girls? Did you mean the adorable and affectionate 1-year-olds?”

The truth is that it wasn’t the first time my baby has been referred to as one of “these kids,” and it hurts every single time. It hurts because I feel it’s stigmatizing and because it defines my baby girl by what she has. The syndrome is what my baby has, not who she is. We are fighting every single day so that the syndrome she was born with doesn’t have a negative impact on her life, and doesn’t define who she’ll grow up to be.

My baby girl is barely a year old. She’s spent way too much time in hospitals. She’s had a few major surgeries and there’s more to come. But you know what? Our daughter is just the precious little baby girl we were waiting for when we were taking these pictures shortly before her birth. She’s our sunshine, and she’s everything we dreamed she would be: a loving, joyful, curious and bright little one. She gave us the same joys her older brother gave us in his first year of life. She blessed us with her first smile and first giggle. Like other parents, we watch our videos of her over and over again: the first time she crawled through the living room, the first time she stood up…but the video we watch the most is the one where at 2 months old she opened her eyes following surgery and saw the world for the first time. Words can’t describe how we feel when we watch this video.

We are not the parents of one of “those kids” with a unbelievably rare syndrome no one has ever heard about. We are the parents of amazing little fighter Mia G.

To the health care professionals: It took us more courage than we knew we had to rise up to the challenges of raising a child with a serious medical condition. Please make sure we don’t need to find more courage just to overcome your words.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? 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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10 Practical Tips for Parents Feeling the Shock of a Rare Disease Diagnosis

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This is a day you will never forget: The day a doctor tells you your child has a rare disease. I recall doctors using medical terminology I’d never heard before while showing me MRI images I didn’t want to see because I didn’t want it to be true.

The initial shock felt like a really bad nightmare. How had I lived 36 years without ever hearing about this horrible disease? It was incomprehensible to me that this disease even existed in the first place, let alone that our precious child has the misfortune of having it. How was this even possible? Why is this happening to my child?

Statistically, we had a better chance of winning the lottery, but the news was the complete opposite. The clinical diagnosis was worse than I ever imagined: I was told my then-2-year-old had a progressive neurological disease with a life expectancy of four to 10 years.

Every experience is different, but here are a few practical things I’ve learned by being the mother of a child with a rare disease:

1. You are the expert when it comes to your child.

My daughter’s initial diagnosis was incorrect. That’s right. Turns out she has a completely different disease. We are all conditioned to believe doctors know all the answers, when in reality they do not. What they do offer is a background of extensive medical training and perhaps most important, the experience of seeing countless patients with a similar presentation of symptoms, etc. so they can diagnosis and treat you. However, when your child has a very rare disease, most have never seen a patient like your child. An excellent doctor will acknowledge that the parents are the experts when it comes to their child’s rare disease and ask for your input.

2. Instincts are more scientific than a doctor’s best guess.

Again, when the diagnosis is rare, parents may know more than the professionals.

3. Ask a friend or a family member to go to appointments with you to take notes (or record the appointment). 

Medical terminology and genetic information gets confusing fast, especially when hearing it about your child.

4. Don’t be afraid to seek grief counseling.

This diagnosis will change your life in an instant and take you on a wild, emotional roller coaster ride. Your marriage, family, career, finances, emotional well-being and personal health will suffer from this diagnosis. Seek guidance.

5. Take care of yourself. 

You hear it every time you fly on an airplane: Please secure your own oxygen mask first before you try to help others. I constantly fail in this department, but it really is one of the best things you can do for your family.

girl standing on beach
Glenda’s daughter

6. If you don’t advocate for your child, nobody else will do it for you. 

You can do as little or as much as you want, but it all begins and ends with you. That said, there are many individuals and organizations here to help you navigate your way. Some of my best resources are other parents farther along on this journey. Network with them via social media and ask for their guidance. Rare disease organizations, patients and parents are gaining a stronger presence each day.

7) You are not alone. A rare diagnosis can feel really lonely, but there is a community here to support you. They may not live in your community per se, but social media is a powerful tool to unite virtual communities across the globe. Although our children may have different diseases, we all share a similar journey. Find a group you feel comfortable with and share your story.

8. Don’t rule out science.

Our child was diagnosed through whole exome sequencing after being misdiagnosed by two doctors. Advancements in genetics are being made dailyDaily.

9. Allow others to help you.

Your friends and family will feel helpless. Sometimes the best gift you can give others is allowing them to help you.

10. You will learn to live in the moment and enjoy your child even more.

Which might be the greatest gift on this journey, albeit a hard-earned one. There are tough days ahead, but there’s also an abundance of love, joy and precious moments with your child.

black and white photo of young girl
Glenda’s daughter

Follow this journey on Hope for Katherine Belle.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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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When the Love You Have for Your Child Feels Lonely

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The online conversation went like this: A woman on Facebook posted an article about how a Monsanto chemical might be contributing to the rise in autism. Another woman, self-disclosing as autistic, said the article was fear-mongering and unfairly demonizing to autistic people. A third woman piped in, saying that because 30-some percent of autistic people have intellectual disabilities, it was right and just to fear the rise in autism. I cringed at the implied message: A life of disability is one thing, but a life of intellectual disability? That, in the woman’s eyes, was tragic.

So I added my voice. With tense shoulders, I wrote one sentence cautioning people against assuming a life with intellectual disabilities is tragic. In response, I thought maybe there’d be some cyber-nodding. I hoped maybe the third woman would realize what she was implying, and say, “Oh of course, yes, I didn’t mean it that way.”

But instead the original poster wrote a reply a few inches long, defending the third woman’s views of intellectual disability. She wrote that it “isn’t ableism” to want your child to have all of their limbs and sight, so it’s not ableism to want your child to be able to enjoy all the benefits of a fully cognitive life — like reading and writing. That was just good mothering, she argued. “We all want the best for our kids.”

That’s about when I closed the computer and carefully backed away. It wasn’t that I disagreed with the woman exactly, although it wasn’t that I agreed with her either. Something inside me was sad, so sad that I wanted to strike back, offer a persuasive treatise, construct an argument using transitional words like Consequently and Furthermore. I wanted to deliver this argument (about what? I wasn’t sure) not to the first woman exactly, who was kind and good (and justified in taking Monsanto to task), and not to the third woman, whom I didn’t know, but to something bigger, maybe the unfathomably vast and noisy air around the culture-at-large. Yet all of it, every word I’d write, would just be armor over a sadness I couldn’t quite name. And armored, ineffable sadness does not, my friends, make for an edifying Internet exchange — this much I knew. So I backed away.

*

“Wait,” I said to my husband. “Can I just say one more thing?”

We were standing in the kitchen, surrounded by dirty dishes and grubby counters. Five minutes ago, we’d been in the living room. We’d been sitting on the couch talking about the online conversation, rehashing the fine points, disliking Monsanto (of course) but also wondering whether it was in fact ableist to want a fully able-bodied kid (my husband said yes). But now we were here, in the kitchen, washing dishes, and I was trying to put the subject behind me. I was trying to listen to his day. I was nodding and watching him scrub. Suddenly I stopped him.

I had one more thing to say. I had the thing to say.

“Go ahead,” my husband said.

I said it slowly and clearly and sadly, and the sentence felt as weighty as a psalm: “It’s hard having a child that other people actively don’t want.” There it was. My husband stopped what he was doing — scrubbing the stove? putting away silverware? — and turned to me. He opened his arms for a hug.

I pressed my cheek into his fleece sweatshirt and stared at the wall.

“I want her,” he said.

*

Girl in a wide-brimmed straw hat, looking off to her left.
Fiona in a wide-brimmed straw hat, looking off to her left.

I want her too. With all my might. I want her, and not the her she would be if she had all her fourth chromosome. I want who she is, as she is. This is another kind of good mothering.

It is strange, though, this loving. I love the kind of kid that others are permitted to say they don’t want. Most pregnant women won’t admit they don’t want a girl, or a boy. But about their future baby, they’ll say as long as it’s healthy. And people will nod. Because it’s OK in our culture to say this. Because when you suggest that a life with intellectual disabilities is not a life less worth living, you might incur inches-long Facebook replies of adamant disagreement.

A friend recently said she didn’t want to have kids too much farther past her present age (37) because of “the risks.” The friend didn’t tell me directly. The friend told another friend, who then told me, and when I heard this I cringed. We all know what “the risks” are. They are a code for people like my daughter, Fiona.

I’m not saying these parents are “wrong” for wanting a certain kind of child. I’m just saying it’s hard living in the zone of parenting other people hope to avoid.

It’s hard having a child other people actively don’t want.

Do you ever say a sentence that strikes so firm and clear and true on the nail of your emotions that you can practically hear the ding? It’s a pleasant feeling, hearing that ding. In my husband’s arms, I looked at that kitchen wall and repeated the sentence to myself again and again. It explained so much about the loneliness of this life, the life of parenting Fiona. It explained the fatigue I sometimes feel after going out in public with her. Beneath people’s adoration of Fiona, of her beautiful smile and striking blue eyes and eagerness to connect, is the unnamed truth: some people feel blessed for not having children like her. And that is a sentence I choke on.

*

I know the pat reply: “They don’t know what they’re missing.” “Fiona is special, a gift from God.” But none of that erases that the culture-at-large often sees her life situation as sad. “My daughter is nonverbal and uses a communication app,” I told someone. The woman’s mouth turned down into a frown, and she offered me puppy eyebrows of sympathy.

Sometimes you have to turn off the voices, the Internet noises. Sometimes you have to turn toward silence, which feels like turning toward the source, as pregnant with quiet as the cushioned sound of air in a snowfall.

But sometimes you need other people to remind you how to do that. So a few evenings later, after the kids were again asleep and my husband and I were left with the day’s final labors — dirty dishes — I closed down Facebook and hit play on Krista Tippet’s podcast, On Being. I hadn’t listened to it in months, but by chance, she was interviewing Jean Vanier. He’s the founder of L’Arche, which are communities of “people with and without intellectually disabilities liv[ing] and work[ing] together as peers.” L’Arche USA’s website says, “People who have intellectual disabilities live in the shadows of a persistent view — present in all cultures — that they are the undesirables. This is one of our world’s significant injustices. It is one we can change.”

Vanier found his calling when he encountered men with disabilities in a French asylum. Tippet asks him about his experiences there, and this is his reply:

I come back to the reality of pleasure, and to the reality of what is my deepest desire? And what is your deepest desire? And the deepest desire for us all is to be appreciated. To be loved. To be seen as somebody of value…

So really, the first meeting I had with people with disabilities, what touched me was their cry for relationship. Some of them had been in a psychiatric hospital, others, all of them had lived pain, and the pain of rejection. One of the words of Jesus to Peter, you find this at the end of the gospel of John, “Do you love me.” So there’s the cry of God, saying “Do you love me,” and the cry of people who have been wounded, put aside, who have lost trust in themselves, they’ve been considered as mad, and all the rest, and their cry is “Do you love me,” and it’s these two cries that come together…

Here’s the balm: cries come together. Love by design won’t stay lonely. The comfort is in the cry itself. It tells me: answer back.

Follow this journey on Star In Her Eye.

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The Crucial Role Patients Play in Rare Disease Diagnoses

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Doctors are taught “if you hear hoof beats, think horses, not zebras.” Horses are the common conditions — zebras are the rare diseases. This advice works most of the time, but for one in 10 people in the U.S., those hoof beats signify a zebra — a rare disease.

The Food and Drug Administration defines a disease as rare if it affects fewer than 200,000 Americans at any given time. There are approximately 7,000 known rare diseases, and these illnesses pose a range of challenges from diagnosis to treatment.

To raise awareness about rare diseases and their impact on patients’ lives, the European Organization for Rare Disorders created Rare Disease Day in 2008. Rare Disease Day takes place on the last day of February each year. Since 2009, the National Organization for Rare Disorders (NORD) has sponsored Rare Disease Day in the U.S.

The theme of Rare Disease Day 2016 is “Patient Voice,” with the slogan “Join us in making the voice of rare diseases heard.” Patients with rare diseases are experts in their conditions — by necessity — since medical professionals often lack knowledge about specific rare diseases.

Shire’s 2013 Rare Disease Impact Report found that physicians generally lack the time, resources, and background to properly identify patients with rare diseases. Among the physicians in the U.S. surveyed, 92 percent reported difficulties addressing the needs of patients with rare diseases during typical office visits. Additionally, the survey found that two-thirds of U.S. patients need to provide their health care professionals with details about their rare diseases. This highlights the crucial role the patient voice plays in the diagnosis and treatment of rare diseases.

In February 2004, Jen Melanson had surgery to remove her thyroid. The surgery irreparably damaged her parathyroid glands, leaving her with the rare disease hypoparathyroidism. After struggling with her disease for several years, Jen poured herself into researching ways to achieve a better quality of life. She participated in clinical trials at the National Institutes of Health and Massachusetts General Hospital, where she found a drug that significantly improved her health and wellbeing.

Jen did not stop there. When her study drug came before the FDA for approval, Jen traveled to Washington, D.C. to provide patient testimony in support of the drug, which was successfully approved. She joined Running for Rare Diseases, a program that matches runners with rare disease patients to raise awareness and funds for NORD’s Undiagnosed Diseases Network. Jen was matched with a runner named Amy, and they worked together to raise awareness for hypoparathyroidism. After Amy ran the 2015 Boston Marathon with Jen’s name on her shirt, Jen was inspired to run in a half marathon herself.

Jen became a powerful patient voice and successful rare disease advocate. But two-thirds of Americans affected by rare diseases are children. When they cannot advocate for themselves, their parents become their voices.

When Eliza O’Neill was diagnosed with Sanfilippo syndrome Type A, a deadly genetic disorder that currently has no cure, her family started the Cure Sanfilippo Foundation. To raise money for this nonprofit, her father launched the “Saving Eliza” campaign on GoFundMe; it is one of the most successful campaigns in GoFundMe history. The money from this campaign supports researchers at Nationwide Children’s Hospital in Columbus, Ohio, who have been working towards a cure for Sanfilippo syndrome for nearly two decades.

For Valerie Tharp Byers, the O’Neills’ awareness efforts provided the clue she needed to get the correct diagnosis for her son, Will. Though Will was diagnosed with autism, Valerie and her husband felt that there was another cause for Will’s developmental delays. When she saw the “Saving Eliza” campaign video, Valerie started crying, and felt like she was seeing her son. She took her suspicions to Will’s doctors, and genetic testing confirmed that Will has Sanfilippo syndrome Type B. Valerie reached out to the O’Neill family to learn more about Sanfilippo syndrome.

Matt Might and his wife Cristina spent four-and-a-half years searching for a diagnosis for their son, Bertrand. After finally identifying mutations to the NGLY1 gene as the cause of Bertrand’s health problems, Matt and Cristina were told that Bertrand was the only person in the world known to have these mutations. Matt took to the internet to find more patients. He wrote a lengthy blog post about Bertrand’s rollercoaster diagnostic journey. In just two months, he found two patients with the same mutations in Turkey. In about three years, dozens of patients were identified, thanks to Matt’s blog post.

These are just a few examples of the impact patient voices have in the rare disease community. On February 29, the rare disease community will raise its collective voice to bring awareness to health care professionals, lawmakers and the general public about rare diseases and their impact on patients’ lives. Follow the hashtag #RareDiseaseDay on social media to learn more, and discover how you can get involved.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. 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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