May 17, 2020

How Wilson’s Disease Made Me Fall in Love

I don’t have Wilson’s disease, but it changed my life. When I met my girlfriend Ginta in August of 2017, hearing the word “Wilson” brought to mind images of Tom Hanks screaming at a volleyball from a raft in the middle of the ocean. Needless to say, like most people, I’d never heard of Wilson’s disease. Then came Ginta. Ginta was pretty much the portrait of the woman I’d always dreamed of ending up with - smart, engaging, compassionate, blonde and stunning. Simply stated, out of my league. But little did I know that the singular element of Ginta that would make me fall hopelessly in love with her was a rare genetic disease.

Don’t worry, I’m not about to make you suffer through my version of “The Notebook,” but I think there is a powerful message in our love story for those who are navigating life with Wilson’s. By any stretch, Ginta was an extraordinary person with incredible character before her journey with Wilson’s began. But, I think she would readily admit that the challenges she’s overcome have left her stronger. When I see Ginta tackle the added complexities Wilson’s has injected into her life with poise and continual resilience, it time and again leaves me with an incredible sense of inspiration. Such moments continually remind me that when I think I'm having an unpleasant day, or complain about some trivial displeasure in my life, I should consider that often times it requires the grit of a warrior simply for her to get through her morning. That is to say nothing of the fortitude and unthinkable courage it required for Ginta to battle back from the depths of the disease’s toll on her body shortly before I met her.

Ginta’s journey with Wilson’s has undoubtedly made her a stronger, wiser, and more compassionate person. She views life, its blessings, and its opportunities with a profound sense of appreciation that is driven from the depth of where she fought. Without that heroic battle, I wouldn’t be blessed with the privilege of her inspiration every day. The point is - a journey with Wilson’s disease can present more than only challenges.

Devin Carter

May 13, 2020

To Those with Wilson’s:
We’re in This Together

How to address you… Survivor, Warrior, Advocate, Seeker, Victim, Comrade in Arms, Adventurer, Dearest Friend?
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I don’t know what to call you, because I’m not sure we can be defined as any one thing. Each day is so different from the next or the day before. There have been so many hurdles to overcome and still more to be conquered. I’ve found in life, there will be terrible things that you never thought you'd face. There will be places you never thought you'd have to go. There will be dark, scary times and there will be exciting, joyful times. You will see wonderful things you never thought you’d experience. Love and hope are the lights I look for on my darkest days.
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And as in every great adventure, there will be the unexpected and the insurmountable. Right here, this part, this horrible in-between that is filled with uncertainty, doubt, and strife… this is the part in the adventure when Frodo is not sure that he’s going to escape the spider's web. This is the part in the adventure where Harry isn't sure whether or not he’s going to survive this last meeting with Voldemort. This is the part where the disciples aren't sure they're going to make it through the storm. This is the part in your adventure where things are unsure and unsteady, but we have to remember that we need to just keep turning the page to get to the end of the chapter to begin a new adventure. We need to keep taking step after step towards hope.
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In the end, you're gonna come out changed and hopefully better than before. My goal is to always try to work towards the “better than before” outcome, maybe not always physically or mentally perfect, but for my spirit and heart to come out stronger and wiser; it’s all about perspective. This can either be the thing that destroys you or makes you stronger. But while you are getting strong, don’t forget to lift others up along the way. After all, we are better together than apart.

Your fellow Survivor, Warrior, Advocate, Seeker, Victim, Comrade in Arms, Adventurer, Dearest Friend,

Amanda Elsts

May 13, 2020

A Word of Advice to Wilson’s Parents: Breathe

Dear past self,
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Breathe. Take a deep breath and just breathe. It will all be okay. You will later have “breathe” tattooed on your wrist to remind you of this simple, but necessary task. You just left the doctor with your daughter after she was diagnosed with Wilson’s disease. The doctor told you that although it is a rare disease, as long as she takes her medication daily and follows the dietary guidelines, she will live a perfectly normal life and Wilson’s will fade into the background in no time. It sounded so simple, and you were so grateful that it was detected early, with no neurological damage. Well, it’s not going to be simple, not at all. From that first day trying to fill her required medication prescription, an eight-year battle with insurance companies and pharmacies began. You’ll end up crying, screaming, threatening, and losing your cool with countless people in person and over the phone, all in an effort to get your daughter the medication she needs. Your daughter will go days, weeks, and months at a time without the medication and you will stay awake all night worrying about her liver. You’ll contact your local news channel, and eventually hire a lawyer. You will have nobody to talk to about your plight for medication because your daughter is the only person in your state with Wilson’s. Remember, it’s a rare disease.
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And then one day, your daughter will be approved for her medication for one year continuously, and the weight will slowly ease off your back in the months to come. Years after your daughter was diagnosed, she will come to be fascinated by her genetic disease, and genetics in general. She will go on to attend graduate school, majoring in Human Genetics, and work in the very same office she was diagnosed in as a genetic counselor. You will go on to pursue your own Master’s Degree in Nursing and your thesis will be on the inequities of people living with rare diseases, specifically medication inequity. You will attend a Wilson’s disease conference with your daughter in NYC, and for the first time in nine years, meet other people with Wilson’s, along with their families. You will finally be able to talk to other parents, who may not have had the same struggles as you, but their own struggles dealing with a child with Wilson’s. You will watch your daughter, who never spoke to anyone about her disease, open up and feel a sense of belonging she has never experienced before. You will meet contacts who actually work for the manufacturing company that produces her medication. You will be astonished and very grateful. But most of all, you will be able to breathe again, without looking at your wrist to remind you.

Beth Patenaude

June 1, 2020

A Transplant, a Diagnosis
and a New Normal

Dear Wilson’s Friends,
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Everyone has a different story! Every diagnosis is unique! Our story is both different and unique.  
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Nine years ago, our daughter, Lexie, at 21 years old was in the prime of her life. A college student, who was so excited about her upcoming semester abroad in Australia, in perfect health. In May of 2011, just three months prior to her journey Down Under, she presented symptoms of mononucleosis. She was weak and barely eating, yet gaining weight. As her “mono” healed, the day eventually came when she was scheduled to leave. In my heart, I knew something wasn’t right, but the doctor gave her the green light to travel. At the airport, we said our tearful goodbyes, which were fueled with excitement, nervousness and concern.  

She called to say she arrived safely, but felt worried because her ankles were swollen. I naturally thought it was due to the long flight and advised her to walk and elevate her legs.

Her condition seemed to rapidly decline as she began to feel horrible. I knew something was terribly wrong. As a parent on the other side of the world, I was overcome with a feeling of helplessness and worry. She finally became hospitalized, and I felt re-assured that she was getting appropriate medical treatment.

That morning, at 2AM our time, we received a call that she had fallen into acute liver failure and had HOURS to LIVE. They believed she had Wilson’s disease. Having never heard of Wilson’s, I immediately researched as much as possible. I was in total shock and literally went completely numb. We were told that it was possible that the mononucleosis might have caused this rare gene mutation to go haywire and cause her dire situation.

My husband, David, and I booked the first flight to Sydney, Australia and the next several hours became a complete blur. The flight was approximately 18-plus hours of having no idea what we would find upon arrival. Somewhere over the Pacific, the flight attendant approached and said she had a telegram for us.  She read the following words… “Your daughter received a successful LIVER TRANSPLANT!” David and I were in complete shock and looked at one another and said, “WHAT?” The word transplant had NEVER EVEN been discussed.  

Once we arrived, we learned so much more about Wilson’s disease, liver transplants and how to navigate our new normal. We now became concerned about our other daughter, Taylor who was 19 and a college freshman. Do we have her get tested? Could she possibly have Wilson’s disease too?

When we returned home, we immediately had Taylor tested. We were told the odds of the second born having the disease was 1 in 646,000. We all had to take a deep breath as Taylor did test positive. Thankfully, Taylor was fortunate to be diagnosed prior to presenting any physical or neurological symptoms. Today, Taylor is doing well and is healthy as her disease is controlled with daily medication and diet. Lexie is now cured of Wilson’s, as her life was miraculously saved by an anonymous organ donor’s selfless and heroic decision.

Now, some nine years later, my advice to a caregiver of someone who is newly diagnosed would be to ask as many questions as you can. Be knowledgeable, supportive and optimistic. Trust your instincts! Over the years, I have tried to instill in my daughters a sense of ownership of their individual medical issues. I recall telling them, “to own it, show your scars, share your stories and always stay strong and positive.”

One struggle that I personally still face today is the guilt that I carry for being a carrier. I’m not sure I will ever get over it, but seeing my girls accept life as it was dealt to them fills me with admiration and pride.  

As I learned, everyone has a different story and every diagnosis is unique!

Warm thoughts,

Susanne Smith

June 25, 2020

A Letter to Myself 10 Years Ago

Hey Bud,
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I know that being an adult can be extremely tough at times and that life isn’t always fair, but once you get your priorities straight, your journey will make more sense. Don’t take life so seriously and be kind to everyone, even your enemies. I know that your past has been really hard but don’t give up now! You have a great support system that has helped you overcome a disability. You will get a college degree and graduate with honors despite what doctors thought. You are definitely going to be famous one day, and I love how much you love life. You are an amazing human being that has achieved what most people could never do. You have already exceeded my expectations. I’m proud of the man you’ve become, and I’m glad that I was there every step of the way.

Mason Owings

June 3, 2020

My Life-Saving
and Life-Changing Transplant

Dear self:
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I know you already know this, but up until your 21st birthday, you lived a charmed life. However, it wasn’t until you made your first real adult decision that your life truly began: when you decided to follow your gut (and follow a guy) to Australia. And even if your heart broke in the process, your soul grew stronger.

If it wasn’t for this experience and this moment, you wouldn’t be the person you are today. You may not even be here today. Because it was in Sydney, Australia, while studying abroad during my senior year of college, that I had an emergency life-saving liver transplant.

Speaking, typing, even thinking those words never gets any easier. Coming to terms with the fact that doctors gave me hours to live will never be an easy thing to simply digest. I will never forget waking up in the ICU without so much as a memory of what happened or why or where I was, hooked up to machines, with blaring screams from other patients, painfully loud beeps and strangers standing over me waiting for the first post-anesthesia words to come out of my mouth. That’s the stuff they don’t tell you.

They don’t tell you that you will cry for a full year every time you have to take a shower and see the giant scar on your stomach that represents the fact that you are alive ONLY because someone else is not. Because they died and were an organ donor and selflessly gave you your second chance. They don’t tell you that you will try to resume normal activity but never be able to truly relate to your friends or family in the exact same way ever again. Facing your own mortality changes that. They don’t tell you that you will need therapy. Like truly crying out for it, because as much as your parents try to understand and listen, you need the ear of a stranger to really hear you and see you. Not as a patient but a survivor.

The doctors suggested that the cause of my acute liver failure could have been something called Wilson’s disease, but they couldn’t be positive based on my labs and liver pathology. And yet, despite low odds, it was mentioned that any siblings should be tested. My sister Taylor tested positive almost immediately, and it felt like my heart was being ripped out of my chest. As the older sister, my one job was to protect her, but I felt like I failed her. If I could go through what I had, the pain, the suffering, one hundred more times to prevent her from ever having to experience it - I would. And yet, in true Taylor fashion, she was understanding and easy-going about everything, accepting it as her new normal, which gave me permission to not be scared for her, but instead embrace the new challenge together.

Now, almost nine years post-transplant and diagnosis, I am proud to say that we have not allowed our story to define us. Instead, we let it inform us and how we see the world and others. Our shared experiences have brought our family closer together, even if Taylor and I are on very different paths when it comes to Wilson’s disease. With a transplant, I am cured, whereas Taylor lives with the disease every day.

I lived the first 20 years of my life with Wilson’s disease and had no idea. But now I live each day knowing that life is precious and you can’t take a single moment for granted.

Love, you

Lexie Smith

May 14, 2020

Just Diagnosed with Wilson’s? Here’s My Advice

To the newly diagnosed:
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You might be feeling scared and uncertain of what the future holds for you. A million questions must be popping into your head.

Am I going to be okay?
What is my life going to be like now?
What is my future going to be like?  
Am I going to be able to work?
Am I going to be able to finish school?

Let me start off by saying you will be okay! You will eventually find your “new normal” and you may eventually feel that Wilson’s disease is the best thing that happened to you (I know that may sound crazy to you right now). Wilson’s disease helped me realize what is most important in life, helped me enjoy the little things in life, brought so many amazing people into my life and made me the person I am today.

I was diagnosed four years ago as soon as I graduated from nursing school. Nursing school was very stressful and made my symptoms severely worse very quickly. I was living with my parents at the time and relying on them for everything, including paying for my necessary medications and food, taking me to and from doctor appointments, etc. I thought I was going to rely on my parents for the rest of my life and I hated feeling like a burden, but I was very wrong. Once I started treatment I began to improve slowly, and eventually I was able to get back on my feet and return to work. I’m currently a phone triage nurse for a medical company, back in school pursuing my BSN degree, and living with my boyfriend in Chicago! I am not going to lie, it sure wasn’t easy making it this far, but I never gave up and most importantly, I believed in myself. I set goals and was relentless in achieving them.

My advice to you is to live every day to the fullest, enjoy the little things in life and be grateful for each day. Your life may not be the same from this point on, but find your “new normal” and don’t be ashamed of it. Do not let Wilson’s disease define who you are as a person. Set goals for yourself and believe in yourself!

Ginta Ginaityte

May 13, 2020

To Caregivers:
We Couldn’t Do It Without You

To Mom and Other Wonderful Caregivers,
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I never knew before this how intense and humbling being a dependent could be. At the beginning of my journey, and even now after living with Wilson’s disease for a couple years, I can get lost in how much pain I’m in, and forget how much it hurts my loved ones, who desperately wish to help me. It must be so hard for them to watch me struggle through a simple task, all while knowing that they can get the job done in the blink of an eye. My struggle isn’t always just the task itself so much as the loss of complete independence. It has been a drastic change in course. I really thought at 30 years old, I’d be buying my first home with my husband and my career would be lifting off, and I think you, mom, were prepared for that too. But instead, my husband left, and now you have graciously taken responsibility for my safety and well-being. I’m back in your house and have become some weird mix of child and adult. I can do most basic things for myself on a regular basis, but holding down a real job is out of my reach for now. To be so wholly beholden to someone I can never fully repay, but so desperately need, is truly humbling. I’ve never felt so vulnerable or so grateful for your support.

I am so thankful for your patience and willingness to help when I ask for it. Thank you for knowing what I need before I do sometimes, especially when I have no words to ask for it myself. You watch day in and out as my body rebels against my will and the emotional roller coaster I endure. And yet, instead of getting upset or frustrated, you just make light of it with me, making me laugh. It was so hard for us at the beginning. I feel so selfish for just focusing only on how I was affected and not how it was affecting you, too. Thank you for continuing to cheer me on anyway. Thank you for seeing my struggle for what it really is: just another mountain to overcome.

Thank you for showing me that it doesn’t have to end here, that there are still other paths to take and adventures to have. It can be so easy to forget that life is all about the unexpected and we can either embrace it or let it beat us down, and sometimes even both. I am so grateful for your sacrifice, your love, and for taking me by the hand and shouldering my load.

Love you and all that you do.

Amanda Elsts