Prader-Willi Syndrome

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Prader-Willi Syndrome
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    Community Voices

    I’m new here!

    Hi, my name is Muku. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #prader-WilliSyndrome

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    'Five Feet Apart' Shows How Friends Manage Chronic Illness Together

    Have you ever seen the film, “ Five Feet Apart?” If you haven’t, go now. And I mean run or dance, but don’t walk. It is one of the most incredible films that displays living life with a rare disorder and/or chronic illness . Sometimes I see similarities from my life portrayed so well in the movie. One of my very best friends has lupus and I have Prader-Willi syndrome (PWS). You could say there’s always something interesting going on. I met my friend at a mutual friends wedding four years ago, and it’s been like magic ever since. We talk every single day. And when I can, I drive (and now fly) out to see her. In fact, she got married back in August. You bet I was there. We’ve been through it all together: boyfriends, life changes, school and medical challenges. A few years ago, I had a growth hormone provocative test, she had some testing, too. She sees many doctors, as do I. She gets medications through her port once a month, and I take nightly injections. I think you get the point. In “Five Feet Apart,” you see the struggles the characters go through, but also their gifts. Each time someone has a surgery, their friend is there. And when one of them doesn’t want to do their regimen, the other one holds them accountable. This is what life as two best friends with a chronic illness and a rare disorder look like. Sometimes, you have to be strong for the other. And other times, you show up in any way you can to make sure the other one pulls through, even on the hardest of days. Being best friends with medical challenges has its up and downs. My goodness though, there are immeasurable amounts of beauty in the chaos. And I firmly believe that’s more of a gift than anyone will ever understand.

    Community Voices

    I have parder willi syndrome

    <p>I have parder willi syndrome</p>
    Community Voices

    I have parder willi syndrome

    <p>I have parder willi syndrome</p>

    What Hunger Feels Like With Prader-Willi Syndrome

    When I hear people say “I’m absolutely starving,” “I feel like I could eat an entire ___” or the ever so popular “I’m hangry,” it makes me twitch a little inside. The reason? For those who have Prader-Willi syndrome (PWS), such as myself, we feel hunger in a painful and never-ending way. There’s been times where I’ve had to hold my tongue, when all I wanted to do was tell people with a frustrated tone in my voice, that they don’t know what hunger feels like. However, that’s just not appropriate or accurate. Obviously, everyone all around the world knows the feeling. There are many individuals who don’t have the proper resources for food. After all, it’s not my place to take away others’ feelings, nor would I ever want to. A small part of me would love for some to understand what it’s like to eat and be starving not even an hour later. Or to be fast asleep and be rudely awoken by piercing hunger pains. To have to face this hunger every day, and constantly choose to be stronger than the starving sensation. To know that the never-ending hunger could be the deadliest thing for an individual like me. And the real kicker here? This feeling starts when people with PWS are young and it just gets worse as they get older. You could say the feeling manifests over time. Then, we have to deal with knowing we aren’t actually hungry, it’s just that our brains are wonky, and giving us the wrong signals. The troubling part of all of this is there’s not much we can do about it just yet. There’s preliminary actions that can be made, but nothing will ever subside the hunger. Each and every day is a learning curve. I can without a doubt tell you that hunger is one of my must frustrating struggles these days. Thankfully, thanks to the help of my specialist, I participate in Weight Watchers. Food has always been and will always be an uncomfortable topic for me. However, each and every day I’m trying.I’m just learning and getting stronger as I go. Follow Alexandria’s story on Facebook

    Community Voices
    Community Voices

    Do Awareness Ribbons Really Help Medical Causes?

    I understood it well enough when it started. Yellow ribbon = bring home the hostages. (Remember that, kids? Americans were being held hostage by Iran back in the late 1970s.) Even the hostages themselves wore yellow ribbons as a secret signal that they knew people back home cared about them.

    To me, it made little sense and the message was just a tad “off.” The origin of the yellow ribbon meme (we didn’t call it that then) was in a song, “Tie a Yellow Ribbon ‘Round the Old Oak Tree,” which was about a prisoner coming home to find a celebration of “a hundred yellow ribbons” around the tree.

    Which was okay as far as it went, prisoners coming home, yellow ribbons to celebrate. But in the song, the ribbons were an answer to the question “Do you still want me?” (after being in prison). Regarding the hostages, that wasn’t a question at all. Of course we still wanted them (except possibly the one who read the Koran while captive).

    Later came the pink ribbons, for #BreastCancer awareness. I have problems with this, too. Pink is the color that in our present society represents girls, so you’d think that pink would be a good choice. But the fact is that men get breast cancer too. And there are other diseases such as #Endometriosis and #CervicalCancer that are unique to those with female reproductive organs. What color ribbon do they get?

    Actually, there’s an answer for that.

    Endometriosis awareness ribbons are yellow, which adds to the confusion about prisoners and hostages. Cervical cancer awareness ribbons are teal and white (combined).

    The number of diseases and conditions associated with each color has proliferated. My personal cause, #BipolarDisorder, shares the ribbon color green with #AdrenalCancer, bone marrow donation, #CerebralPalsy#Dwarfism, eye injury, #Gastroparesis, #Glaucoma, leukemia, literacy, #Neurofibromatosis, and stem cell research, to name but a few.

    These days we are encouraged to wear or decorate our profile pictures with orange ribbons for gun control. But orange already signifies awareness of:

    Agent Orange
    Cultural Diversity
    #KidneyCancer – Renal Cell Carcinoma
    Reflex Sympathetic Dystrophy (RSD) – #ComplexRegionalPainSyndrome (RSD).
    Self Injury
    Spinal #Cancer

    Admittedly, people who have those conditions and those who love them need support and awareness, but what does the ribbon actually mean when it means all of those things? Do people really go up to a ribbon-wearer and ask, “What are you wearing that ribbon for?” Or are they used only when a bunch of people gather who are advocating for the same thing, in which case why do they need ribbons?

    The proliferation of ribbon colors is stunning, too. In addition to the green, yellow, pink, orange, and teal/white mentioned above, there are awareness ribbons in: black, blue (two-tone, blue/gray, denim jean blue, indigo, navy blue, light blue, robin’s egg blue, royal blue, pale blue), brown, burgundy, cloud (?), copper, cream, gray, gold, jade, peach, pearl, purple, puzzle (not technically a color), red, silver, teal, violet, yellow, and white, plus assorted combinations of the above and myriad shades of most. I could find only a few colors that represented a single condition or cause. And symbols proliferate, too: infinity, circle, star, butterfly, and even fox tail.

    I once saw a person soliciting donations with a black-and-white cow-spotted ribbon, for a dairy farmer who’d lost his barn in a fire. A number of the other colored ribbons are used for fundraising too, particularly the Susan G. Komen Foundation’s pink ribbons, which can be found on nearly any piece of merchandise you’d care to name. But if you have a t-shirt with, say, a green ribbon design and a slogan about bipolar awareness, why do you need the ribbon at all? The slogan carries the necessary information.

    Will ribbons for causes go out of vogue? Not soon, anyway. I’m not saying that all these causes and conditions don’t need awareness and understanding and fundraising. And there are certainly “orphan diseases” that don’t have the awareness factor that pink ribbons convey.

    What I’m worried about is the signal-to-noise ratio. With all the combinations, what does any particular one mean? (I had to look them up on a chart to write this post –

    After all, what does a pink ribbon really convey? Self-check your breasts monthly? Get mammograms? Celebrate survivors? Give money?

    Ribbons are easy to make and to wear, but knowing what to do about what they represent is a matter for education, not just awareness.

    Community Voices

    There's joy in this Journey

    People often ask me to go into detail about how I deal with the symptoms a Prader-Willi like Syndrome- and every-time, my heart automatically drops. I often push down such thoughts because honestly, every single day is a constant and unruly challenge. Just for a second, imagine a time when you were so hungry you were truly angry, better known as what some folks these days’ call “hangry”. Well, I often feel this hunger pain. But for me, I could have just eaten a half hour earlier and then the hunger is back and fierce as ever. It may subside but it never leaves. Many individuals say that there’s this “constant” hunger. I don’t feel that in the way they do. But when I’m hungry I’m starving; it goes from fine to famished in seconds. However, hunger is not the only hurdle I maneuver on the daily. Along with it comes; #LearningDisabilities, obsessive compulsive disorder (OCD), speech challenges, #SleepApnea, and reduced hormone production. There are several others, but for now we will focus on the ones I feel affect me the most, which are the ones mentioned above. Something I would like to note is this; #PraderwilliSyndrome and for others like me, Prader-Willi like Syndrome is a spectrum disorder, just like Autism. Which means that everyone who may have this disorder has different functioning abilities and various magnetized symptoms. Over the course of sharing my story, many people have approached me and asked me how I do it. And then there are those who have said some astonishing words out of pure ignorance and not taking the time to learn. I’ve heard sayings such as “I’ve heard they eat tinfoil”. This lady was referring to those with Prader- Willi Syndrome. Her words stung like a squeeze of lemon juice in a fresh cut. When you know better, you do better. And thankfully I could educate said lady on what exactly living with a Prader-Willi like Syndrome means. Eating tinfoil isn’t my style. But I will say when it comes to the how do I do it’s, honestly, I wasn’t given a choice. With each new day, I have find ways to overcome this unruley disorder. I will be very candid and go as far as to say, I’m currently at my highest weight. Growing up, my parents closely managed my caloric intake as well as my physical activities. All possible access to food was locked- such as our pantry and fridge. At school, I had an aide who I fondly refered to as my body guard. Essentially, she was there to make sure I did not have access to any food except for what my parents provided in my lunch. Fast forward to 2012, I received my drivers license and that’s when it all changed. I instantly had constant food accessibility whenever I wanted. With such easy ways to acquire food, this can quickly become dangerous and dare I say life threatening (which it did). A few years later, in the summer of 2017, I started weight watchers with the gentle yet serious push of my amazing geneticist. Beginning my weight watchers journey has hands down become one of my biggest tools. To this day, I now see every food with a specific point value. There are times when the last thing I want to do is track my points and get in my workout. Additionally, there are times, more frequently it seems, that I wake up from sleeping and I feel famished. It’s this piercing stomach pain that makes me feel as though I haven’t eaten in days. Often, I’ll end up drinking some water, or I’ll chew some gum to try and distract myself. If at that point I still feel those gnarly hunger pains, I’ll give in and usually have a protein bar. With the aid of Weight Watchers and my other tools, my goal is to lose a total of one hundred and eighty pounds. But I know that’s not going to happen overnight. When it comes to school, my learning #Disability sure goes into play. I’m now in college working towards my next three associates degrees, I already have one. I had a IEP in all throughout elementary school and high school. That same information followed to me college. Because of that, I have accommodations for my classes. I get time and a half on all my tests and quizzes, I get to use a recording device, I also can get a note taker to take notes if I see fit. When I was in elementary school, I started being seen by a speech pathologist twice a week and this continued through late high school. I was taken out of class and we would work on my pronunciation on M, B, P words. Because I have low muscle tone, I must work hard to make sure my upper lip is “awake” and able to meet my lower lip. Even as an almost 26-year-old, my speech challenges are still an everlasting hurdle. When I’m tired, not focused, or talking too fast, it’s very difficult to make sure my top lip and bottom lip meet. I remember growing up, more so than now, my family and friends would say they couldn’t understand me. It was always rather aggravating. But as I got older I realized to be heard, I needed to talk slower and focus on the words I’m saying. Having a Prader-Willi Like Syndrome is scary, overwhelming, confusing, and downright unruly some days. But it’s not and end all by any means. This life I live is a beautiful one. I get to experience life from a very different perspective than those around me. I get to show other that no matter what, hope always lives on. Because of my disorder, I have become someone who knows what it means to defy the odds and fix my eyes on the sun. I’ve found out the importance of paving the way for others just like me. I’ve been given a remarkable journey, and I’m very proud of my story

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