Nicole Castellano: “Life is not easy with a disability or limitation”

Life is not easy with a disability or limitation. Many times you find yourself thinking about the days “before you got sick.” I used to beat myself up all the time because I couldn’t function like I used to. As a part of our “Unstoppable” series, I had the pleasure of interviewing Nicole Castellano. Before her […]

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Life is not easy with a disability or limitation. Many times you find yourself thinking about the days “before you got sick.” I used to beat myself up all the time because I couldn’t function like I used to.

As a part of our “Unstoppable” series, I had the pleasure of interviewing Nicole Castellano.

Before her symptoms began, Nicole was a world-class skating athlete, pilot and entrepreneur who loved and embraced life. She had just graduated from college and started her own business when she started experiencing excruciating abdominal pain. For the next 12 years, she saw countless doctors and underwent several unnecessary surgeries and procedures, but her debilitating symptoms continued. Finally, Nicole met with a doctor who suspected acute hepatic porphyria (AHP), a rare, genetic disease, and diagnosed her. Today, as a patient ambassador for Alnylam Pharmaceuticals, Nicole’s mission is to inspire others who may be suffering and empower them to advocate for themselves.

Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?

My name is Nicole, and I currently live in Sarasota, FL with my partner Mike and my dogs Mila and Laszlo. I’m originally from Chicago, but moved to Florida in 2017 and love it here! I have gone through a major transformation through battling an unknown disease, fighting for diagnosis and my life while still trying to keep myself intact as I’ve overcome these struggles. I’ve learned a lot about myself, especially loving and accepting myself even though I can’t do some of the things I used to be able to do before I got sick.

In terms of my health journey, before my diagnosis, people described me as a firecracker. I was a pilot, a world-class skating athlete, an entrepreneur, and a really outgoing person. I loved to travel and explore and just embraced life. After developing debilitating symptoms soon after college, I became a shadow of my former self. I battled these symptoms for over 12 years until I was finally diagnosed with acute hepatic porphyria (AHP), a rare, genetic disease characterized by potentially life-threatening attacks and, for some people, chronic pain and other debilitating symptoms.

Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you”?

I had just graduated from college and started my own business and things were going really well…until my first AHP attack. I was walking my dog and suddenly, this excruciating abdominal pain came crashing down laying me flat on the ground. I could not walk so I had to crawl to the side of the road and collapsed into a field. The pain was so bad I literally thought, “This is it, I’m dying.” That was when it all started. I continued to have AHP attacks, abdominal pain, vomiting, nausea, and back, neck and chest pain. It hurt to breathe and I felt like I was getting stabbed in my chest. I had extreme weakness to the point where I needed a wheelchair — I even needed someone to help carry me to the bathroom.

I spent the next 12 years in and out of hospitals searching for a diagnosis and saw many different doctors…gynecologists, gastroenterologists, endocrinologists, neurologists, pulmonologists, pain specialists. During one visit, it was suggested that a hysterectomy would get rid of my abdominal pain and that it might be the only thing that could help. I couldn’t believe it — my biggest dream was to have kids — but the pain was so bad, I couldn’t live like that anymore. I felt like I had no choice if I wanted any quality of life. I went through with the procedure and nothing changed — the pain continued. I know my life today would be very different if I hadn’t had done it, but I was so desperate for relief.

As challenging as the process was, I refused to give up. I knew I was sick and there had to be an explanation for these horrible symptoms even though so many doctors couldn’t figure it out. It took a lot of determination to keep going back and try to learn what was happening and to stay hopeful, especially when I was feeling so sick most of the time. At times I felt doctors didn’t believe me or gave up because they couldn’t figure out this puzzle that I presented. I had faith even as I was losing myself and my body slowly that I knew it wasn’t in my head. I knew if I just kept after it, I would get the answers I was desperately seeking. I had no choice, there was no alternative but to give up and that wasn’t an option. Not knowing what I was fighting was worst part because it just eats at you. I felt like no matter how serious the diagnosis, if I at least knew, I could get treatment and start feeling better. I was not about to sit passively by when my life was at stake. After many years of searching and “dead-ends,” I finally met with a doctor who suspected AHP. He ordered a urine test to confirm the diagnosis, and it came back positive. Finally, I had an answer. Knowing the name of what I was dealing with gave me renewed hope and I knew there was a possibility to get my life back. After feeling like I was in the dark for years, there was finally a path back to the light.

Can you tell our readers about the accomplishments you have been able to make despite your disability or illness?

  • Ran in the Chicago Marathon 40th Anniversary Race
  • Started two new businesses
  • Awarded the 2005 Businesswoman of the Year by the Federal Business Advisory Council
  • Awarded the President’s Award by the American Porphyria Foundation
  • Caregiver for my dad after he had a debilitating stroke for over two years until he passed away
  • Traveled to Africa, Bolivia and Peru crossing Machu Picchu off my bucket list
  • Went Skydiving — another bucket list item!
  • Featured on Lifetime’s The Balancing Act Morning Show in a “Behind the Mystery” segment about AHP; check it out!

What advice would you give to other people who have disabilities or limitations?

Life is not easy with a disability or limitation. Many times you find yourself thinking about the days “before you got sick.” I used to beat myself up all the time because I couldn’t function like I used to. Now I listen to my body and if I need to rest, I turn on the gentle button and just tell myself, “You know what, I’m going to rest because that’s what I need.” Be kind yourself, especially on the bad days. It’s not only okay to take care of yourself, but it’s imperative. Also, check out support groups! After being diagnosed, I was able to find a community of others living with AHP and it’s been a very healing and empowering experience.

For anyone who is struggling with finding a diagnosis, my advice would be to try to have as much confidence as you can to explain to doctors what you’re going through, have faith that you know your body better than anyone else, don’t give up hope, and ask the hard questions. If you don’t, you may not get the answers that you’re looking for. Sometimes a seed of hope is all you need to get through the darkest times.

None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?

My parents were my biggest support, especially my mom. She advocated for me when I couldn’t advocate for myself. I struggled to get through each day, desperate for an answer, and she stood by my side and never gave up.

How have you used your success to bring goodness to the world?

I promised that when I got better, I would write a book and share my story with people so they can feel less alone as they struggle to find a diagnosis or when they are first diagnosed. In the meantime, I like to participate in advocacy and fundraising events for AHP and I also work with Alnylam Pharmaceuticals to raise awareness of AHP as a patient ambassador.

Can you share “5 things I wish people understood or knew about people with physical limitations” and why.

  1. When you aren’t feeling well, it’s hard to show up to events with family and friends. I would like people to understand that sometimes I cannot predict how I’ll be feeling and if I can’t make it, it doesn’t mean it’s not important to me. In addition to feeling lonely and missing out, your loved ones get impatient or mad at you when you’re doing your best to be there for them.
  2. People say, “You don’t look sick.” People with disabilities or limitations are very good at hiding it and trying to appear “normal.” In fact, to us, it is normal. Even if you can’t see it, it’s still there so please don’t judge a book by its cover.
  3. It is not my fault that this happened to me, I did nothing to deserve this. I have to judge what things I can do. Sometimes I misjudge and take on more than I can handle, and it worsens my condition. Please be patient and don’t blame me as I’m always doing my best. It frustrates me more than it does you and no one is more unhappy about dealing with this than I am.
  4. You don’t always have to ask me how I’m feeling, although I appreciate it! My illness is one facet of me and doesn’t define who I am.
  5. Please ask me, don’t assume. I will let you know if I can’t do something because of my illness. Please don’t assume that because I’m limited that I always need help. Let me decide for myself.

Can you please give us your favorite “Life Lesson Quote”?

You must be your own health advocate — no one else is going to fight for you as hard as you will.

We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂

There are so many people I would love to talk to! I would have to say Michael Jordan. Being from Chicago, I was motivated by his talent, work ethic, success and mental strength. He always inspired me to be my best and to know you can always achieve your goals if you work hard enough.

This was very meaningful, thank you so much! We wish you continued success!

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