McCune-Albright Syndrome

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McCune-Albright Syndrome
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    Linda Silano

    Dating When You Have McCune-Albright Syndrome

    I grew up with an extremely rare bone disorder called McCune Albright syndrome. This disorder affects 1 in 100,000 to 1 in 1,000,000, so I guess you can say I won a genetic lottery. I want to explore dating and disability and how it has affected me personally. I have always felt that people viewed me as powerless because of my condition. It has been very challenging because I have felt that I have been limited in setting boundaries in relationships. I think about what my dating experiences would have been like if I didn’t have a disability. Would I have the perfect man? I guess perfection doesn’t exist for those born without a disability either, although I couldn’t stop thinking that this was the primary reason why I couldn’t be in a relationship. Let’s face it, dating is difficult for everyone. Throw in a disability mixed in with anxiety and you have a great first-date disaster. I have lived most of my adulthood hoping and wishing for the perfect guy to come into my life. I created this fantasy as a coping mechanism to dull the pain and loneliness I was experiencing. Was it OK to create a fantasy? It served a purpose in my 20s, but now in my 40s, not so much. I believe everyone with or without a disability can find happiness and date and find someone that is right for them. It has been a tough journey of self-discovery for me, but if I can come face to face with accepting the part of me that I have always tried to deny or keep hidden from potential mates/dates, I think everyone can. I have realized that whether you’re disabled or able-bodied, it’s OK to just be you! That’s all anyone can ask for.

    Linda Silano

    Finding Self-Worth With a Physical Disability

    For those of you who don’t know much about McCune Albright syndrome, it’s an extremely rare bone condition. I have struggled with confidence issues for as long as I can remember because of this condition. I have always tried to hide my vulnerabilities from the outside world. Sometimes it works, and sometimes it doesn’t. At the end of the day, many of us just have to figure things out. Take me, for example. I have struggled with confidence for as long as I can remember, from being a young girl to making friends in high school. I’m a woman in her late 40s who is still trying to fit in. Self-worth plays a significant role in many women’s lives — especially when it comes to dating. I can’t tell you how many times I have tried to make plans for a date — only to cancel due to my fear of rejection. I guess my fear or rejection has played a key role in how I dealt with dating. I have always felt that men would never accept me for who I am. I now realize that I need to get to a point in my life where I truly appreciate myself. I have always thought that I need to be a “perfect” woman in order for a man to love me. Growing up with a visible disability, though, has made me realize that no matter what my flaws may be, I am still worthy of love.

    Community Voices

    My Daily Battle with Chronic Pain

    My name is Brittany and I am from and live in Indiana. I was born with a genetic bone disease, FibrousDysplasia. I wasn’t diagnosed until I was 13. I had a tooth pulled and because the swelling never went down I had to get a biopsy, in which the diagnosis followed. My pain started shortly after, all in my head only at the time. By the age of 15, my pain was disabling and was taken put of school. After a bunch of doctors and tests, I was then diagnosed with a brain tumor covering my entire pituitary gland. Surgery was needed immediately. After the initial removal surgery, the pain was worse and I wasn’t able to even move my head. I remember telling my mom I was dying and was not ok. After being sent home a week later to celebrate my 16th birthday, it got even worse. I woke the next day to a bed soaken wet, was all spinal fluid. I was rushed back in and prepped for another surgery, this time to put tissue from my thigh up there to stop the leak. Following that surgery I knew I was ok. I was then diagnosed with McCuneAlbrightSyndrome, another form of my bone disease, along with numerous other diagnoses. To beat it all, I then started having pain in my jaw on top of the headaches that never stopped even after surgery. Three months later I was prepped for my first surgery on my jaw, to shave down the bone. The pain never stopped. I eventually had even more surgeries, including one to remove a bone tumor on my jaw. In 2004, I had got an infection in my jaw following a surgery and it led to me having an emergency surgery. It went horrible and a doctor had ignored protocol and left me with a very low sodium, life threatening. Afterwards, she fixed it in a matter of hours, instead of days that it should of took. This wasn’t known of until I was rushed in one night following episodes of losing control of my entire body. In the er, I was strapped down and sent home with a benadryl reaction. Shortly after was sent home, my endo informed us what had happened afyer surgery so we was sent to a specialist and sat the entire day doing tests. I wasn’t talking or walking on my own at that point and tremors were uncontrollable. By the end of the day I was diagnosed with brain damage, causing 2 conditions(central pontine myelnosis and extra pontine myelnosis) and a movement disorder(chorea). I lost a couple years of my life and endured pain I could never describe. I thankfully can walk and talk normal again but I am left to feel like a child inside and have yet to recover from that. I later was diagnosed with fibromyalgia and TrigeminalNeuralgia. My disease and conditions all do not have a cure so I have continued to have surgeries and will for the rest of my life. The pain has never got better, I suffer 24 7, 365 days a year, always. I have recently lost all my teeth due to my disease and the disfigurement. It has been 3 years and I hope to find help soon so can have my smile back. Everyday is a struggle but everyday is full of hope and joy. I love finding joy in rhe small things. I am blessed to be a co parent of 2 nieces, along with my mother. I now don’t have time to set in bed or to rest daily, they need me. And I think I need them just as much, if not more. I have become an advocate and hope to use my pain and voice to help others see the light and joy everyday and always smiling through it!

    #RareDisease #ChronicPain #ChronicIllness #TrigeminalNeuralgia #McCuneAlbrightSyndrome #FibrousDysplasia

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    Linda Silano

    Growing Up With McCune-Albright Syndrome and Having Self-Doubt

    I was born with a rare condition called McCune-Albright syndrome. It is a genetic disease of the bones, skin pigmentation and precocious puberty. This disorder is not inherited, and is caused by a random mutation in GNAS gene which occurs early in development. The severity of this disorder and features depends on the number of cells that contain this mutated gene. Living with such a rare disorder has not only been physically challenging, but also emotionally challenging. This disorder has shaped the way I have felt about myself. Sadly, I let it dictate my life and allow it to strip me of my self-worth. I didn’t have the ideal childhood that many have: attending school, spending time around friends and getting to enjoy being a kid. I was home schooled for most of my years in grade school, which made it extremely difficult for me to maintain friendships and relationships. As an adult, this aspect of my life became all the more challenging. Burned in my memory is suffering from broken bones, body casts, numerous surgeries and unbearable pain. I still struggle with chronic pain on a daily basis, and as with everything in life, I have good and bad days. Not only were my bones affected, I had precocious puberty, meaning I started puberty at an early age. My height was compromised because of this, and in part due to multiple surgeries as a child and as an adult. Living with this disorder has taken a toll on my self- esteem and at one point, tarnished the supposed “rosy” view on life we’re told to have. Now I realize that there is hope for a bright future ahead of me. Life has definitely been a challenge, but I try to do my best and stay positive. I surround myself with a great support system with people who are positive and guide me through life’s obstacles. There have been times that I have felt defeated, lonely and hopeless. Now I look at life in a different light. I honestly wouldn’t be the person I am today If I hadn’t gone though this. I think everyone at some point in their lives has gone through the “what ifs” of every decision they’ve made and every experience they’ve been through. For me, it has been focused on “What if I was taller, prettier, or possessed more confidence?” Our society has always put a great deal of pressure on all of us about appearance and being “perfect.” I have put so much useless energy into trying to “fit in” that I let it consume my life. I can’t even begin to tell you how many times I tried to put myself out there — whether it was an opportunity to meet new people or simply going on a date. I’ve had missed opportunities and regret that when it came to dating, I let my fears and insecurities surrounding my disability get in the way. My disorder tried to keep me isolated and trapped in a cell of my own making. I let the fear of rejection and thinking a man could never accept me take over my thoughts. I let the fear about my life get in the way of pursuing some of my goals. Even though I graduated with a B.A. in sociology and I am a licensed skin care therapist, I always felt judged based on my disability. I’ve since realized that there are endless possibilities to what I can achieve. I’m speaking not only for myself, but for everyone who has ever felt defeated in life. I have found that self-acceptance and embracing my uniqueness is the key to finding true happiness and having faith in a higher power. I know that I am on my way to finding my own voice and will hopefully help and inspire others to accept their true selves despite challenges they might be facing. McCune-Albright syndrome is greatly under reported and considered an “orphan” disease. I would like to change that and help others who may be going through similar experiences and provide more insight and inspiration. Anything is possible, and I truly believe the sky is the limit. At this point in my life, I am 45 and happy to announce that I am engaged. After so many years of self-doubt, I have a man in my life who truly accepts me for who I am. I am so grateful to have him in my life. So if you’re struggling, remember to keep searching for light, because after the rainbow, there’s always sunshine.

    Lauren Ruotolo

    Getting to Know People With Disabilities

    “Do you have polio?” “Why are you so pretty but so small?” “Does a nurse live with you?” “Oh, I can’t date a ‘handicapped’ person.” These are the types of questions and comments I deal with every day of my life. I am a 4-foot tall woman living with a rare disease, McCune-Albright syndrome which deformed my bones enough that I need to walk with crutches and also gave me my period at the very young age of 9 months old. It was extremely difficult as a child to go from walking with nothing to walking with crutches at the age of 5 years old, but today I feel great, still walk with crutches, and still get my period. But instead of the orthopedic sneakers my doctors always wanted me to wear, I decided to swap them out for stilettos or platform shoes I wear every day as I walk in New York City. Being a New Yorker, you have to walk everywhere, and therefore I probably stick out like a sore thumb. Like I said, I am 4 feet tall with red hair, walk with crutches and wear stilettos. Of course I stick out! The problem is that people look at me and literally size me up all day long. Whether they stare me down, look back as they pass me on the street, or physically say something to me, people often think they know who I am and what my life is like. It doesn’t matter who it is, adults, children, and sometimes even animals. Well, I don’t know what animals think about me, but they certainly bark at me sometimes! If you know me, you would never think to yourself “Poor Lauren. How does she live? Is her life hard because she is physically disabled?” And more importantly, “How can she walk with crutches and stilettos?” The answer is yes; I am physically disabled, but mentally I am just like everyone else. So why do so many people want to be the producers of my life? Therein lies the question I have been asking myself forever and the answer came to me shortly after I wrote my book “Unstoppable in Stilettos.” People think they know who I am, and as a matter of fact, who all disabled people are and feel bad for them. Are you feeling bad because we don’t look like you or maybe because we don’t have the same exact life? Or because you don’t personally know any disabled people? What you should do is take a chance to get to know someone. Just give five; not a high-five but five minutes. You may have told a very different story in your head about who that person is. Didn’t your mom and or grandmother always say “Get to know someone before you assume who they are.” If  you’re going to take five minutes to get to know someone, what do you ask, what should you do? This is why I created The 5-Minute Rule. It’s really easy… Minute 1 Introduce yourself, where you are from, and begin the geography game to see if you know someone in common. Minute 2 Talk about your career, your latest adventure, or where you are in your life. Just see where the conversation goes. Minute 3 and 4 Now is your chance to ask anything you want. Go for it and see how the person responds. Usually people aren’t afraid to answer anything as long as it’s sincere and coming from a good place. Remember, keep it simple and think before you speak. Minute 5 Finally, wrap it up and see if you want to continue the conversation, become friends, or potentially date. Regardless, you can say to yourself I am proud I got to know someone who is different. Remember, in life confidence and self-love can empower us to be better, unstoppable people. So moving forward, be confident in the fact that everyone has a story, and may not be the person you created in your head. Just give them 5! We want to hear your story. Become a Mighty contributor here .

    Megan Keeling

    Parent Receives Child's Rare McCune-Albright Syndrome Diagnosis

    Dear Meg, Wow, you just took four kids to the doctor’s office by yourself. You go girl! That’s no easy task! You have the cutest little 2-week-old ever. You don’t know this yet, but time is about to fly like it has never flown before. I wish I could warn you. A weight check appointment for an infant and a well check appointment for a 3-and-a-half-year-old are usually pretty simple, right? As you will soon find out this seemingly simple day will go down in the books as the bombshell day. The day everything changed. The day your fast-paced life will come to a standstill. The first moment in your life that will fill you up to the brim with fear. It’s coming soon, but for now you sit in the doctor’s office with the “ducklings” — that’s what you call them. Bailee did fabulous and is gaining weight perfectly. Now its Jack’s turn. Aside from little Jacky walking a little crookedly, he is doing great. Totally healthy! You casually mentioned this to the doctor and he asked if you guys could stay and get a quick X-ray after the appointment. You obliged and pointed the ducklings towards the radiology department. The staff was a little annoyed you had so many kids with you, because this meant that Jack would have to do this alone, something they thought would be a hassle — but you knew your little man. He would be fine. He was confident; he trusted you and could totally handle a solo pelvic X-ray. The waiting room was big and he was on one end and you were on the other. You explained to him that someone would call his name and he needed to go with them to take a picture of his bones and that they would give him instructions and he needed to listen to them. He said, “OK,” and quickly went back to playing with his brother and sister. The nurse came out and called “Jack Keeling.” You smiled a little and watched your little peanut stand up with confidence. I saw your eyes fill up with tears of pride. He proudly walked passed you with his little half-smile, half-smirk and just before they went through the doors, he turned and said bye to you. Deep breath, Mama! Little do you know this is just the beginning. Jack, Megan’s son. The series of X-rays took only a few minutes and he walked out those same doors with his dimples on full display. He was proud of himself and knew that he made you proud, too. You gathered up the crew and headed to the car. After taking the kids to the doctor alone, what is the only logical thing to do afterward? Well the Chick-fil-A drive thru, of course! You made it home a short time later with your hands full of yummy food and hungry kiddos. You don’t know this, but right about now the doctor you just saw is picking up the phone and dialing your number. Baby Bailee was still in the car seat all tuckered out from the morning, fast asleep. You hear your phone ringing, answer and quickly recognize the voice on the other end. You step outside as he tells you the radiologist had just called him after seeing Jack’s X-rays. “There is some sort of lesion on Jack’s femur.” You are a little confused, not realizing what that meant. This doctor knows your family. He knows you are about to move to Armenia of all places. The movers were coming in just a couple weeks. He knew that. And then, the “bombshell.” “Mrs. Keeling, I’m really sorry but the radiologist thinks this might be cancer.” Everything surrounding you at that moment fell silent. You were leaning against the house with a blank face. It sinks in for a second. The doctor explains that Jack needs an MRI right away and suggests putting everything on hold until then. You kept repeating the word “OK” and then that’s when the inevitable happened. Tears. You aren’t really a crier so this is a big deal for you. The conversations wraps up. The plan is to figure out some insurance logistics and then wait for the call to schedule the MRI, which will probably be in a few days. That was rough, but you got through it! Here comes the hardest part. You have to go back inside now. The kids are in there. Jack is in there and has no idea this is going on. You look hesitant. You also need to tell your husband but you don’t want to call him. That would end in a hot mess situation. Texting is a little too casual for the “C” word, but it will have to do. And what about your parents?! They are coming in two days. You have to tell them. Your friends — it’s Thanksgiving tomorrow and you are going to “Friendsgiving.” There is no way you can hold it all in. You toss out a couple texts and hold your breath. Is this really happening?! I wish I could tell you that you are doing well. That although you have a long road ahead of you and so does Jack, everyone will be fine. I wish I could tell you that he doesn’t actually have cancer. It becomes apparent that you can’t even look at Jack because you feel so bad. He is oblivious and completely unaware. So innocent. You want to just scoop him up and leave, I know. You can’t do that though. I know you understand. It’s hard, but you are going to do great. This is just the beginning. Things will get worse before they get better. You will find out in a couple weeks that he doesn’t have cancer. It will be a relief, but it’s still complicated. What he does have won’t threaten to take him from you, but it will make his life hard and painful. I know you can handle this. In fact, you were born for this. There is no cure. No real treatment, only damage control. You two will be a team and you will rock this. You will help take part in the research, advocacy and logistics of his care for McCune-Albright syndrome (MAS) and fibrous dysplasia (FD). Part of your research will lead you to a Facebook group and having a #FDfamily, where everyone supports and loves each other. You will also learn, especially with rare diseases, that sometimes doctors aren’t always right the first, second or even third time. But your search will lead you to the National Institutes of Health (NIH) where you will have the top experts looking out for your son. You were given this job for a reason and you can do this! Is your heart going to break? Probably multiple times, but the only thing worse than your heart breaking is his heart breaking. Jack will do all the physical work and will always be there to give you his famous “true love kisses.” Any fear or stress will disappear. So don’t worry. He will make his soon-to-be “gazillion” doctors fall in love with him and your heart will swell with pride. Lastly, remember that although you are an active participant in this journey, you will not be the main character. This is Jack’s story. You will be there to help support and guide him through this road of life that just took a sharp and abrupt turn. Keep a smile on your face no matter what. Surround him with love and he can feel secure. Let him know he is not alone in this journey. Remember he is watching you. If you are scared, he will probably be scared. Stay happy, strong and positive for your little man, your peanut, the little boy who you love more than any combination of words could ever accurately describe. He will flourish because of the fearlessness he sees from you. He will tackle his obstacles with that same little smirk over and over. He will make you proud, so proud. Love, Meg, two years from now The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to community@themighty.com. 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.

    Rita Jaskolla

    McCune-Albright Syndrome: A Letter to My Rare Disease I Want to Expose

    To my dear friend, McCune-Albright-Syndrome (MAS): If doctors didn’t tell me that I have a rare friend living inside of me, I wouldn’t have noticed you for quite some time. But you showed up. You stretched my body length when I was actually too small for it. You made me look older than I really am so that I looked a little displaced. You were so jealous that you did everything to be my only friend in life, because the way you changed me scared the rest away. You live inside of me and you are well disguised. Nobody can see you. Nobody can hear you. But you played with parts of my skeleton and tissue, and that’s where the doctors can see you. When I became a teenager, you showed up fully and scared the doctors with a loud “boo.” But they returned. They were curious. They tried to study you to help me, but you didn’t allow them to read your rules. You’re shy and you forced me to learn to love you. You made sure that you won’t go away. You love being with me. The scars of all 16 of my surgeries will always remind me that you live inside of me. You managed to put me in a wheelchair for one year when I was 12 years old, but looked 16. Then you forced me to walk with crutches for over two more years. You challenge me to my mental maximum. You made me so strong and so full of loving life that I received a gift from the universe the moment I asked for it: I got the chance to live a full year in the United States! And it was the best gift I ever received – filled with positive experience, very nice people, some struggles of course, and a lot of new experience and insights. I grabbed every little piece that came along to learn from it. And you still stayed with me, fully disguised. Although it was a tough life so far, there is one true gift you handed over to me. It is a rare gift. Many people dream of it and we all know that one has to pay the highest price for it:  you gave me 100 percent freedom. I am free from any medical treatments, free from groups I deeply belong to, free from true friends (not really fair…), free of my own family or a partner (I am very angry about this), and free of financial security for a great survival. And that’s the downside of the coin. With no true friend ever in my entire life, because I was instead an entertainer for others, I lack the relevant ability to trust strangers. Strangers I met abused my intellect and my friendly personality. They abused my kind offer to be a friend. I gave them so many tries that I had to give up on ever finding the right people. You did everything to keep me just for yourself. And I can’t let go of you because you are with me – I can only tell you to go into my furthest corner and stay there. Don’t move anymore. Be quiet. You can stay if you be quiet. And you agreed. You figured out it’s time to go to sleep and to give back 90 percent’s worth of life quality to me. But then the financial crisis approached. The environment changed outside and there’s no comfortable place for MAS survivors. We’re too rare to take care of in society. We’re free people. We’re not really involved in the habits and movements around us. But we need a voice. Others might finally have to look at you, and study your different faces and actions to include you and not keep you outside anymore. It’s time to talk about yourself. Show us some signs! Be more visible and open. Tell us where you come from, why you’re here, and what you’re up to. For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .