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Each year, we at Invisible Diseases honor extraordinary survivors, who go out of their way to raise awareness and hope for others, despite their own suffering. An Invisible Diseases Visible Hero is a unique person who selflessly helps people, without prejudice, without judgment. Only a valiant and generous heart toward all people, all cultures and lifestyles, living with invisible diseases and ailments the world cannot easily see. A true hero will help all in need…
Meet Victoria Piekut. She has lived her entire life with some form of illness. She has pushed through her struggles and decided to live her life still fighting for her dreams, and helping others to believe in their own dreams. Victoria has a kind disposition and a fierce heart. Despite her illness, she competed and won the title of Miss Pennsylvania USA!
Many in her position keep quiet about their physical challenges. Not Victoria. She has decided to make her private suffering into public service. Please take a moment to read her incredible story, in her own words…
"I am so honored to have been chosen to receive the "Visible Heroes" Award! My battle with invisible diseases has been a long one, but I never let my struggle define who I am and never let go of hope. Wearing the Miss Pennsylvania USA crown is a dream I never thought was attainable. Since my early teens, I imagined representing the great state of Pennsylvania on the Miss USA stage, and at the time, that’s all it ever could be — a dream.
Growing up for as long as I can remember, I was always sick. In and out of the hospital with stomach pains, headaches, dizziness, and so many other symptoms that doctors had no idea what to tell me. I heard time after time that it was all in my head and I was making it up for attention. Because I looked normal on the outside and did have good days, nobody understood that I was affected by something serious on the inside. After years of suffering and misdiagnoses with treatment that almost killed me, I finally had answers.
I suffered from two different "invisible" health conditions. The first is known as Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a disorder of the autonomic nervous system (that handles the things you don’t have to think about like breathing, heart rate, etc) and causes the blood in your body to pool at your feet making your heart work harder and faster to pump everything properly. This causes symptoms like dizziness, headaches, nausea & abdominal pain, heart palpitations, chronic pain, brain fog, sleeplessness, fatigue, & severe dehydration. Each day, I would become a little more dehydrated from my heart working so hard and every two weeks I would go to the hospital to receive 3 liters of IV fluids to try to keep the dehydration at bay. Eventually, that led to a home healthcare nurse visiting me every two weeks to administer IV fluids at home. What we didn’t find out until years later was the cause of this condition for me — Ehler’s Danlos Syndrome (EDS). This is a defect of the connective tissue in your body causing your joints, ligaments, skin, organs, & blood vessels to be much looser than they should be. A lot of EDS patients are extremely hyper mobile and that is a key indicator.
Growing up, I couldn’t participate in normal activities that other kids could, like sports. The only place I found some normalcy was through competing in pageantry. I could push myself physically for a weekend and at the same time I was gaining confidence in who I was, life skills, and recognition for my achievements all while spreading awareness of these conditions. But I was still too ill for what would be required of me as Miss Pennsylvania USA. For years, I watched in the audience supporting my friends and the new winners. What I didn’t know is that years later, with lots of prayers and God’s grace, I would experience a period of relief. I would know my body and it’s triggers and be able to handle it. I would actually be able to build up my muscles enough to exercise and it would make my body stronger and healthier. I would become an entrepreneur and run a thriving women’s fashion company called Wight Elephant Boutique (when growing up, I was never able to hold a part-time job.) And I would be at such a healthy place that I would finally give my best shot at Miss Pennsylvania USA.
Each day living with this title is an absolute dream come true. It has given me the platform and opportunity to impact so many lives while inspiring hope in those who are currently fighting an invisible battle. The fact that I will be competing at Miss USA and bring awareness to these conditions on a national level — that is something I could never imagine. Don’t ever think that you aren’t capable of greatness. No matter your circumstances in life, whether that is a health condition or other hardship, know that anything is possible, you are capable of accomplishing your wildest dreams, and you are not alone." - Victoria Piekut
…Victoria Piekut, Invisible Diseases 2020 Visible Hero!
Follow Victoria Piekut at:
Wight Elephant Boutique - www.wightelephant.com
Miss Pennsylvania USA - www.misspennsylvaniausa.com
