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What do you feel is the hardest part about living with PH1?

Living with PH1 can be really challenging, and oftentimes looks different for everyone. What do you feel is the hardest part about living with PH1? What do you wish others better understood?

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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6 Young Adult Books About Transplants

Going through a transplant can be extremely tiring, frustrating, and feeling like you’re in isolation. But you’re not alone! Here are 6 books that prove that:

1. “Faceless” by Alyssa Sheinmel
When Maisie Winters wakes up, she’s in the hospital. The last thing she remembers is running through the hills of her neighborhood one misty morning. Slowly, she puts the pieces together. Before she could make it home, a storm gathered. Lightning hit a power line and sparks rained down, the hot-burning electrical fire consuming her. Destroying her face. Where her nose, cheeks, and chin used to be, now there is…nothing. Maisie’s lucky enough to qualify for a rare medical treatment: a face transplant. At least, everyone says she’s lucky. But with someone else’s features staring back at her in the mirror, Maisie looks—and feels—like a stranger. The doctors promised that the transplant was her chance to live a normal life again, but nothing feels normal anymore. Before, she knew who she was—a regular girl who ran track and got good grades, who loved her boyfriend and her best friend. Now, she can’t even recognize herself. New York Times bestselling author Alyssa Sheinmel has created a gripping and gorgeously written tale of identity and love. This is a story of losing yourself and the long, hard fight to find your way back.

2. “Five Feet Apart” by Rachael Lippincott
In this moving story two teens fall in love with just one minor complication—they can’t get within five feet of each other without risking their lives. Can you love someone you can never touch? Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions. The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals. Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment. What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?

3. “Things We Know By Heart” by Jessi Kirby
In this unforgettable novel, Quinn Sullivan falls for the recipient of her boyfriend’s donated heart. After Quinn’s boyfriend, Trent, dies in an accident their junior year, she reaches out to the recipients of his donated organs in hopes of picking up the fragments of her now-unrecognizable life. But whoever received Trent’s heart has chosen to remain silent. The essence of a person, Quinn has always believed, is in the heart. If she finds Trent’s, then in a way, she will still have a piece of him. Risking everything to get closure once and for all, Quinn goes outside the system to track down nineteen-year-old Colton Thomas, whose life has been forever changed by this priceless gift. But what starts as an accidental run-in quickly develops into something more, sparking an undeniable attraction. She doesn’t want to give in to it—especially since he has no idea how they’re connected—but the time Quinn spends with Colton makes her feel alive again. No matter how hard she’s falling for Colton, though, each beat of his heart reminds her of all she’s lost . . . and all that remains at stake.

4. “Heart To Heart” by Lurlene McDaniel
Elowyn Eden and Kassey Messechek are best friends. They share every aspect of their lives. But one thing Elowyn has not yet shared with Kassey is that she checked the organ donor box on her newly acquired driver's license. Kassey only learns of this in a startling and devastating way—when Elowyn's life-giving donor wishes are about to be honored. Arabeth St. Clair has not had the luck to have a best friend. Due to her diseased heart, she's led a sheltered life. When Arabeth is sixteen, she and her mother receive the call that will change their lives—but they don't know to whom they should be forever grateful. When the worlds of these three girls and their families intersect, lives are changed in ways never imagined. Most especially, it is Kassey who sees things differently, for she can keep alive the memory of her dear friend by sharing the renewed life of another teenage girl, while helping to ease the pain of the two families involved and coming to terms with her own.

5. “Saving Jessica” by Lurlene McDaniel
Jessica McMillian and Jeremy Travino are a perfect couple. But now Jessica has been diagnosed as having kidney failure. She is on dialysis three days a week and is so depressed that she's not sure she wants to live. Her one hope for a normal life is a kidney transplant, but she's an only child and her parents aren't suitable donors. Jeremy is determined to donate one of his kidneys to her, but his parents are terrified of losing their only child. Will Jeremy find the strength to go against his parent's wishes and do what he must to save Jessica?

6. “The Arrival of Someday” by Jen Malone
In this heartfelt and emotionally candid contemporary YA, author Jen Malone delves into the life of a teen whose world is brought to an abrupt halt when she learns she’s in dire need of an organ transplant. Hard-charging and irrepressible eighteen-year-old Amelia Linehan could see a roller derby opponent a mile away—and that’s while crouched down, bent over skates, and zooming around a track at the speed of light. They don’t call her Rolldemort for nothing! What she couldn’t see coming, however, was the unexpected flare-up of a rare liver disorder she was born with. But now it’s the only thing she—and everyone around her—can think about. With no guarantee of a viable organ transplant, everything Amelia’s been sure of—like her college plans, the mural she’d been commissioned to paint, or the possibility of one day falling in love—has become a huge question mark, threatening to drag her down into a sea of what-ifs she’s desperate to avoid. Then a friend from the past shows up. With Will, it’s easy to forget about what’s lurking underneath the lightness of their time together. It’s easy to feel alive when all signs point elsewhere. On the other hand, with the odds decidedly not in her favor, Amelia knows this feeling couldn’t last forever. But what can?

📚 Happy reading! ❤️

#themightyreaders #Transplant #CysticFibrosis #HeartTransplant #KidneyDisease

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Young Adult Books Featuring Genetic Disorders

Having genetic disorders can be isolating. So here are 4 young adult books about genetic disorders to tell you that you’re not alone:

1. “A Step Toward Falling” by Cammie McGovern
*This book may trigger individuals who experienced sexual abuse, violence, or assault. Please do not read if this triggers you!

Cammie McGovern follows up her breakout young adult debut, “Say What You Will”, with this powerful and unforgettable novel about learning from your mistakes, and learning to forgive. Emily has always been the kind of girl who tries to do the right thing—until one night when she does the worst thing possible. She sees Belinda, a classmate with developmental disabilities, being attacked. Inexplicably, she does nothing at all. Belinda, however, manages to save herself. When their high school finds out what happened, Emily and Lucas, a football player who was also there that night, are required to perform community service at a center for disabled people. Soon, Lucas and Emily begin to feel like maybe they're starting to make a real difference. Like they would be able to do the right thing if they could do that night all over again. But can they do anything that will actually help the one person they hurt the most?

2. “Just Breathe” by Cammie McGovern
David Sheinman is the popular president of his senior class, battling cystic fibrosis. Jamie Turner is a quiet sophomore, struggling with depression. The pair soon realizes that they can be their true selves with each other, and their unlikely friendship develops into something so much more. But neither Jamie nor David can bring themselves to reveal the secrets that weigh most heavily on their hearts—and their time for honesty may be running out.

3. “Five Feet Apart” by Rachael Lippincott
In this moving story two teens fall in love with just one minor complication—they can’t get within five feet of each other without risking their lives. Can you love someone you can never touch? Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions. The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals. Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment. What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?

4. “Rules for 50/50 Chances” by Kate McGovern
A heartrending but ultimately uplifting debut novel about learning to accept life's uncertainties; a perfect fit for the current trend in contemporary realistic novels that confront issues about life, death, and love. Seventeen-year-old Rose Levenson has a decision to make: Does she want to know how she's going to die? Because when Rose turns eighteen, she can take the test that tells her if she carries the genetic mutation for Huntington's disease, the degenerative condition that is slowly killing her mother. With a fifty-fifty shot at inheriting her family's genetic curse, Rose is skeptical about pursuing anything that presumes she'll live to be a healthy adult—including her dream career in ballet and the possibility of falling in love. But when she meets a boy from a similarly flawed genetic pool and gets an audition for a dance scholarship across the country, Rose begins to question her carefully laid rules.

📚 I hope this list can help someone 🧬

#themightyreaders #DownSyndrome #CysticFibrosis #HuntingtonsDisease #SickleCellDisease

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3 Young Adult Books That Have Burn Survivors

To survive a fire can be traumatic and can also feel very lonely. Here are three YA books that focus on burn survivors:

1.”Scars Like Wings” by Erin Stewart

Ava Lee has lost everything there is to lose: Her parents. Her best friend. Her home. Even her face. She doesn't need a mirror to know what she looks like--she can see her reflection in the eyes of everyone around her. A year after the fire that destroyed her world, her aunt and uncle have decided she should go back to high school. Be "normal" again. Whatever that is. Ava knows better. There is no normal for someone like her. And forget making friends—no one wants to be seen with the Burned Girl, now or ever. But when Ava meets a fellow survivor named Piper, she begins to feel like maybe she doesn't have to face the nightmare alone. Sarcastic and blunt, Piper isn't afraid to push Ava out of her comfort zone. Piper introduces Ava to Asad, a boy who loves theater just as much as she does, and slowly, Ava tries to create a life again. Yet Piper is fighting her own battle, and soon Ava must decide if she's going to fade back into her scars . . . or let the people by her side help her fly.

2.”Faceless” by Alyssa Sheinmel

When Maisie Winters wakes up, she’s in the hospital. The last thing she remembers is running through the hills of her neighborhood one misty morning. Slowly, she puts the pieces together. Before she could make it home, a storm gathered. Lightning hit a power line and sparks rained down, the hot-burning electrical fire consuming her. Destroying her face. Where her nose, cheeks, and chin used to be, now there is…nothing. Maisie’s lucky enough to qualify for a rare medical treatment: a face transplant. At least, everyone says she’s lucky. But with someone else’s features staring back at her in the mirror, Maisie looks—and feels—like a stranger. The doctors promised that the transplant was her chance to live a normal life again, but nothing feels normal anymore. Before, she knew who she was—a regular girl who ran track and got good grades, who loved her boyfriend and her best friend. Now, she can’t even recognize herself. New York Times bestselling author Alyssa Sheinmel has created a gripping and gorgeously written tale of identity and love. This is a story of losing yourself and the long, hard fight to find your way back.

3.”Everything That Makes You” by Moriah McStay

One girl. Two stories. Meet Fiona Doyle. The thick ridges of scar tissue on her face are from an accident twelve years ago. Fiona has notebooks full of songs she’s written about her frustrations, her dreams, and about her massive crush on beautiful uber-jock Trent McKinnon. If she can’t even find the courage to look Trent straight in his beautiful blue eyes, she sure isn’t brave enough to play or sing any of her songs in public. But something’s changing in Fiona. She can’t be defined by her scars anymore. And what if there hadn’t been an accident? Meet Fi Doyle. Fi is the top-rated female high school lacrosse player in the state, heading straight to Northwestern on a full ride. She’s got more important things to deal with than her best friend Trent McKinnon, who’s been different ever since the kiss. When her luck goes south, even lacrosse can’t define her anymore. When you’ve always been the best at something, one dumb move can screw everything up. Can Fi fight back? Hasn’t everyone wondered “what if”? In this daring debut novel, Moriah McStay gives us the rare opportunity to see what might have happened if things were different. Maybe luck determines our paths. But maybe it’s who we are that determines our luck.

📚 Happy reading! As always, if you want to talk about anything, please reach out. We can rise from the ashes together.❤️‍🔥

#themightyreaders #burnsurvivors

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Genetic testing for the parents of a fanconi anemia child # fanconi anemia

Hi! I have 5 children and I’m 42. In 2006 my daughter had her stem cell (unrelated ) bone marrow transplant. She did very well long story short she is now 22 and has had skin cancer and was treated with removing the cancer. Now she was just diagnosed with thyroid cancer. Also something is going on with her liver, continuos elevated liver enzymes. We’re waiting on results from a ct at this time. February 12 she sees the doctor for a surgical consult and then will receive radiation
I’m worried since there still isn’t much research on how they are doing as adults
Also my youngest son has another inherent disease called hyperlipidemia. He sees a cardiologist annually to see when he will need medication for this. My daughter was diagnosed by geneticists. I requested a referral today to see a geneticist to see what I’m predisposed to. (I took my data from ancestry and uploaded it to genapp. And it’s loaded with all the genetics stuff. I have 9 dominant disease that I carry (not sure which will be the one that affects me)
I plan to show the geneticists. My whole family has all sorts of disorders mental and physical and quite a bit are hard to diagnosi. Especially with the auto immune area

Has anyone done this? Does anyone have an adult child after their transplant ? I would love to know how they are doing…any advice or tips?
Thank you

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I'm new here!

Hi, my name is aintgettinanydeader, AKA Jim
I was diagnosed with MDS-EB1 in 2020 and received an allo stem cell transplant in March of 2021.
Still beating the odds, and hoping everyone else is doing great as well!

#MightyTogether #MyelodysplasticSyndromesMDS

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A Thought About Mental Health Professionals

#I have been living with schizophrenia for almost 40 years. I have found that many people have the common misconception that just because someone is a mental health professional, they are able to speak with authority on any mental health condition. This is like saying that because someone is an MD he can function as a general practitioner one day, a brain surgeon the next, perform open heart surgery the following day and just for good measure do a liver transplant the next. Dealing with psychosis requires a special skill set that most mental health professionals simply don't have. In their ignorance many of them think that they are qualified to deal with psychosis simply because they are mental health professionals and psychosis is a mental health issue.#MentalHealth #Psychosis #BipolarDisorder #SchizoaffectiveDisorder #Schizophrenia #MedicalProfessionals

(edited)
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New Stem Cell Trial for People with Secondary Progressive MS

Exciting news about an initial trial by an international team to transplant nerve stem cells directly into the brains of 15 people with secondary progressive MS and found that this strategy appeared safe and has the potential to stop MS progression and promote tissue regeneration. More research is needed, but exciting research. Have you participated in MS research? What type? What are your thoughts about stem cell research and trials?

Here’s some additional information about stem cells and MS.

www.youtube.com/watch

Ask an MS Expert: Stem Cells in MS

Many types of stem cells have the potential to slow MS disease activity and repair damage to the nervous system. Join Ask and MS Expert to hear from Dr. Jeff...
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What’s a health goal you set but find it challenging to implement?

Making health goals can create a roadmap for you to follow when you’re looking to make decisions about your well-being. It’s not always easy, though, to implement every goal immediately — especially when you’re met with challenges or barriers. This can be anything from health limits and demands, limiting beliefs, finances, your living situation, or even circumstances that are out of your control.

What’s a health goal you set but find it challenging to implement?

#KidneyDisease #Caregiving #Parenting #RareDisease #Transplant #PrimaryHyperoxaluriaType1 #CheckInWithMe

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How has PH1 affected your dating and love life?

From employment to body image, dating to maintaining personal relationships, we know PH1 symptoms can affect life in many different ways (both good and bad).

Whether it’s stigma, lack of public understanding, or the impact your condition has on your confidence and self-image, it can be challenging to navigate relationships of all kinds.

How has PH1 affected your ability to date and explore romantic relationships, if those are of interest to you? Let’s share and help one another in the comments below. 💌

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1