Alexandria Brown

@alexandriabrown | contributor
I have a very rare disorder known as Prader Willi Like Syndrome. Living with a PWS Like Syndrome means each day brings its own set of challenges. But I’m still determined to live life fully. My goal is to show others than no matter what you can defy all the odds the doctors will put in front of you. This life is different and challenging but it’s oh so beautiful.
Community Voices

I’ve got this

Over the last few months, I’ve had people ask me how I’m doing. There’s a smile across their face but the brows on their face tell me a different story. The look of slight concern. I tell them I’m fine. That I’ve got this. I’m great.

All the while when I tell them, it’s me I’m ultimately trying to prove this to myself as well. I’m good. I’m fantastic, I tell myself. Because I can’t fail. I can’t fall.

Moving from CA to ID has by far been one of the hardest challenges I’ve faced. Having Prader-Willi like Syndrome makes change practically excruciating.

But I’m thriving. I’m fine.

I knew that moving thousands of miles away was what I needed to do. If I ever wanted the life I planned of, the life I dreamed of, this is what I needed to do. So with a handful of grit and even more hope, I decided to chase my dreams. This was the way I could live my life with as much independence as possible. Yet still having my family around.

A few weeks after arriving to Idaho, I found a job at a local preschool. Right after Christmas, that job ended because the business shut down. Then early January of this year, I accepted my next job working with adults with disabilities. I figured I could take an understanding and maybe I would be good at it. For the first time in my working career, I quit without giving a two weeks notice. Because I had to put my mental health first.

This is my third week of being unemployed. My parents have kindly allowed me to work for them while I continue to find my next job. Decided to take this week off because I felt bad. I’ve been home pushing out applications with hope yet feeling a little more disheartened this week than last.

But I’m good. I got this.

This past Saturday was my twenty eighth birthday. First one where I didn’t have my sisters, my aunt, and a few others. I was thankful to spend time with the family I have here in Idaho. But it was definitely bitter sweet.

I’ve also come to learn that when you move thousands of miles away, sometimes friendships start to fade. I miss people I’ll most likely never hear from or see again. And that’s gut wrenching to me.

But I’m okay.

My overall health has been put on the back burner since I moved here. I’m starting to realize I need and want to get back into it. Just not sure how to find the focus for that. I’ve done it once, I know I can do it again. I also need to find ways to get my body moving more.

I honestly don’t know how I’ve made it this far. I go back and fourth between what am I doing and wow look at what I’m doing.

Many nights end with tear stained cheeks with my big mess of hair on the pillow. Unsure and overwhelmed. Torn between I’ve got this and I can’t do this anymore. Half the time I don’t know what I’m doing. And I’ve honestly cried more in the past six months than I ever had before.

For the most part, I’m still taking it all in. The change, the struggle, but also the beauty. But I can do this. I’ve got this. Keep reminding myself these words when I constantly wonder what’s next.

Big life changed and living with a Prader-Willi like Syndrome are no easy task together. But I’ve come so far.

2 people are talking about this

The Parts of My Depression People Don't See

People are often shocked to find out I have clinical depression . I’m usually the loud-mouth, fun-loving girl. The first one to be there for a friend at a drop of a hat. And the last one to say no to a good time. They don’t see it, though. They don’t get to see the hair so tangled because running a brush through my hair feels like lifting a dead weight. No one knows now that I work full-time, I feel as though I have no more energy for anything else. They don’t see sometimes I’m too exhausted to eat. Or that, even on my best days, I still feel as though I’m not doing enough. But you know what? In a twisted way, I’m proud those around me don’t see it. That means I’m handling it well, right? Well, at least that’s what I think it means. That’s not always the case. But I like to think it is. I was diagnosed two years ago with clinical depression . I now take medication for it every day. Each day is a new piece of my story. And even though I find I’m more tired these days, I’m proud I’m still here to keep writing a new page.

'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.

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

Birthday's with a side of Fears

I’m turning 26 soon. It’s nonsense I tell you. I remember being in high school just dying for a chance to become the age I am now. Thinking how twenty year olds have it all together and that they’re so grown up. Ohh the conversations I would love to go back and have with naive high school me. I would tell her that no one person has it all together, and even those lovely women you admire and look up to, still have their struggles. I would tell her; you have no idea the mountains and rivers you’re about to embark on. More importantly, I would sit down next to her, look her in the eyes, and say, it’s going to get harder as you get older, but have no doubt you will find beauty in every aspect of your journey.

I’m not sure why, but I find the closer it gets to my birthday, I start to panic. Not in the world is ending type of way. More about the fact I’m one year closer to my thirties and man, that’s freaky. I have such grand ambitions for myself and what I want in life. I want to climb to the mountain tops and shout at with boldness and such certainty in what I dream of achieving. In such a deep way, I long for others to see that I’m going to make it. That no matter the consequences, struggles, doubts, long nights, fears, unknowns, and everything else this world throws at me, I’ll be okay. But most of all, I think I want to ingrain that into my own head.

I’m typing this with tears streaming down my face. The older I become, the harder it is for me to find ways to work around my diagnosis. Putting that out here, for the world to see and hear, absolutely kills me. I pride myself (perhaps, a little too much) in being independent and constantly telling those around me… no, I got this. Even during the times, I most certainly do not. You see, most 20 somethings’ quickly approaching their thirties are getting engaged, moving out, starting to look at having their own children, starting their careers, etc. They are embarking on their next grand adventure. Precisely laying down the stepping stones to their forever. And then there’s me. The girl who is currently embarking on a complex medical journey. The girl whose medical life scares her more than she’s ever told even her closest of friends. The girl who doesn’t know what the future holds.

Right now, I’m choosing to go to battle daily for my body. My weight has become out of hand and ridiculous. I’m participating in weight watchers, tracking my points, doing what a “good weight watcher should do” but most days that isn’t enough. Now, please keep in mind that my body is programed to gain weight at lightning speeds. So, if I’m not constantly on my game, things can rapidly take a turn for the worst. I’ve been on this weight loss battle for what feels like forever. With each new doctor, there comes a speech about how my weight is atrocious. Which, I completely agree, it sure is. I’m trying, and since the beginning of the year, I’ve managed to lose about five pounds. Typing that is almost a joke. Because, in the grand scheme of things, five pounds is basically worthless. There are so many days, especially recently, where I don’t even know if what I’m trying to do matters. What is the point of losing ten pounds, when I have about 180 more to lose? Does it even count? Why am I obsessing over my weight? Do people only value me based on how much weight I lose? These are just a few of the thoughts that go through my head at night and try to wreck me. I know, and strongly believe, I’m more than my weight. I matter and no matter what, I’m trying to remind myself that I’m beautiful how I am now. But, I do have a long way to go.

This upcoming month will hold a great deal of change for me. I’ve decided to leave one of my jobs and just zone in on my health. I’ll be focusing on school and becoming the healthiest version of myself that I can be. Taking time to put myself, my mental, and physical well-being first. Because at the end of the day, I’m the only one who can truly fight for what I need. This will make certain things look a little different for a while, but I think that is okay.

As I look to the future, I’m a little bitter that I don’t have that of a typical 26-year-old. There’s so much I wish I could do. But my story has never been typical, and it never will be. That is not who I am. I’m slowly learning to embrace the fact that I’m here to create waves, to make a difference, and to light up the dang tunnel to show others it can be done. Living life with a Prader-Willi Like Syndrome as twenty somethings is a constant and often unruly challenge. But let me say this loud for the people in the back, I’m a spitfire, I’m tenacious, and incredibly stubborn. At the end of the day, I’ll be okay. It’s time for a change and I’m making it boldly. Here’s to embracing my story and causing a scene for the good. Here’s to living my story. Here’s to 26.

3 people are talking about this
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

1 person is talking about this