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Bari’s Story


"I want you, reading this, to feel hopeful."

Bari with her son, daughter, and dog, and they are all smiling

Bari’s story first appeared in ‘Patients Rising’ - a national nonprofit organization dedicated to providing support and education to people with chronic and life-threatening illnesses.

This is a story about my rare disease and how it almost killed me.

August, 2016: I was at the funeral of a very special man, the father of one of my closest friends. I was there with my friend Mindy, and the whole time we were sitting there, I kept opening and closing my hand. My fingers were tingling and it felt so weird.

When the funeral was over, I explained I could not go to the cemetery because I was just feeling so... “off”. I was dropping Mindy at home when she suggested taking me to the ER. The constant opening and closing of my hands was alarming to her. I told her I was going to be fine. I just needed some calcium. I dropped her off and went home.

Calcium. It’s an element most people equate with milk and strong bones. For me, calcium is so much more. When I don’t have enough of it my body starts acting up. By acting up, I mean it starts tingling, cramping, twitching, seizing. If that seems crazy to you, well, it seems crazy to me too.

I remember I got home and quickly changed out of my funeral clothes into comfy clothes. I walked my dog, Leia. I remember texting with my daughter Drew and sending her some pictures I found online. She was at summer camp as a junior counselor and I was so happy she had a phone so we could communicate almost daily. As I was texting her, my fingers started to go numb and I couldn’t type. I speed dialed my doctor who told me to call 911 and get to the hospital. I said OK.

But I procrastinated (it’s a “Bari thing”) before driving myself to the hospital. When I finally got there my whole arm was numb. Valet wasn’t available, so I made my own spot and walked into the ER. When I tried to talk my words slurred. I fell. A crash team gathered but didn’t know what to do. By this point, I couldn’t use my arms or fingers but somehow mumbled clearly enough to get Siri to call my doctor. The ER Nurse took the phone from me and spoke to my doctor. There were so many people around me, medical professionals all gawking and curious, because they never saw anything like this before.

The “This” no one had seen before is hypoPARAthyroidism, a rare disease that affects approximately 70,000 Americans. HypoPARAthyroidism is when you don’t make enough parathyroid hormone. In my case it was because my parathyroids were removed when I had total thyroidectomy back in ’98. Because the parathyroids regulate calcium in the blood, without them, I can only supplement calcium and use Natpara, a parathyroid supplement-type drug. Sometimes it works well. Sometimes it doesn’t. When it doesn't, my nervous system crashes. HypoPARAthyroidism is no picnic.

The ER doctor came in and said she would be with me soon. Then everything went black. I couldn’t move or speak. In my head I was saying I don’t want to die. I was thinking, I need to text Drew because I didn’t tell her I loved her after my last text. And I did not want to die. I wanted to hold my kids and make this nightmare end.

The doctors determined that based on how low my numbers were and how much IV calcium I needed to get the levels in my blood back within the normal range, that if I walked into the ER “4 minutes later”, I would have died.

Since then, I have been to dozens of doctors in 3 different states because finding someone who knows how to manage this rare disease is also rare. I have had my blood drawn on average twice a week. I have taken more medicines than I can count. I never know if any given day is going to be good or bad. So, I live my life to its fullest and take nothing for granted.

I have accomplished things these past 2 years I never thought I would. Biked across the Golden Gate Bridge. Zip-lined mountains in Colorado. Soared in a hot air balloon. Hiked across a mountain. Traveled to the most amazing places. I celebrated! I’ve made meaningful memories. Even now, I make sure to plan something every few months so I have something to look forward to and feel good about.

I couldn’t survive this journey without the love of my family. But I feel for them. They have to put up with me not feeling well half the time – going to bed at 8pm. And my friends – the real ones – they understand that me not feeling well isn’t some excuse for not going out, it’s my reality. My disease doesn’t respect plans. It just acts up whenever it feels like. So, I’ve gotten to know my body and my limits. I feel grateful that I am alive. I will fight this battle with hypoPARAthyroidism for the rest of my life along with my loved ones, and I’m okay with that.

It’s been two and half years since that funeral and my subsequent trip to the hospital, and I am still not regulated. I can’t get better. Sometimes it’s awful. I had my brush with death. “4 minutes”, my doctor said. Four minutes more and I would have died. Now, every time I see a doctor, they remind me how close to death I was.

You never know how much time you have. Don’t waste your 4 minutes.

In September of 2018 I bought a journal. It is black, and in white letters it says “I am Grateful”. I bought this journal to document a new and exciting chapter of my life.

I was going to see Dr. Mishaela Rubin at Columbia University in New York City, and two weeks later I was heading to Chicago for the 2019 HypoPARAthyroidism Association Conference. In 20 years of being hypoPARA, I’ve never met anyone else with this disease. Maybe this would be a fresh start because I was feeling so sick.

I decided to take my sister with me on my trip to New York because it was her 50th birthday. I had the perfect few days planned for my sister and I. We hadn’t traveled together in years and never alone! We were going to see “Watch What Happens Live with Andy Cohen” and had tickets to see the Broadway play “Come From Away”. I also hired a professional photographer to document us in a mini photo shoot and even had hair blowouts booked.

But life had other plans for me. Our dad got sick and we had to fly home. He held on until we got there but it was a hard goodbye. I never would have been able to take that call alone so I am so thankful my sister was there by my side. Everything happens as it should, and I am grateful we were together. I had to cancel my appointment with Dr Rubin and my plans to attend The HypoPARAthyroidism Association conference. And I just got sicker. I never got to write in that journal.

I lost so much weight and my calcium was constantly too high. I was lost. And then my husband left. I never lived alone with hypoPARAthyroidism. It was on our one-year wedding anniversary, on November 10, 1998, that I had become sick.

I couldn’t give up, I had to find solutions and get myself better. Somehow, I got in touch with Dr. David Karph at Stanford. I emailed him pleading for help. Within minutes, my phone rang with a Palo Alto number. It was Dr. Karph. We spoke for a long time. He understood exactly what I was feeling and experiencing. He explained there was a new form of parathyroid hormone he is working on that is long lasting with very positive initial results. I told him I had an appointment with Dr. Rubin in New York in April and he said she was going to take part in the phase 2 clinical trial sometime in the future. He spent so much time talking to me and I am forever grateful to this man who I someday hope to meet. Dr. Karph was the start of this journey of which I am embarking.

In the meantime, my local endocrinologist and my general practitioner both retired after being my primary doctors for a very long time. Lost was an understatement.

In April 2019 I saw Dr Rubin. We discussed the trial but it was so new and she did not have much information on it, but said “I’ll put you first on the list”. I followed up with her in July 2019. She had much more information regarding the criteria for the phase two clinical trial. It was a trial of a drug called “TransCon PTH” and we went over the check list one by one to see if I could actually qualify. It seemed like I would, though I would have to wait until sometime in the last quarter of 2019. We scheduled a follow up for mid November 2019.

At this point, from all the stress in my life, my calcium started to crash though I’d made no changes in medicine. I would do anything to be back on a parathyroid hormone replacement because when I was on it (back in 2016 – a different story), I was able to function normally. It takes no imagination for me to feel for those who suddenly had to go off of the miracle drug Natpara, due to the FDA recall. I know exactly how they feel and I wish the company used what happened to me to help prevent the 200+ ER visits (and still counting) happening to others due to the NatPara recall.

October 2019

That brings me to now. I just got home from the 2019 HypoPARAthyroidism Association conference in Denver. For the first time in my life I sat among people who understood me. It touched my heart to see the supportive caregivers asking questions and helping their loved ones. I didn’t have that. In 22 years, my husband never went to a doctor appointment with me. He didn’t believe my condition was real. It was in that moment, sitting in a room with fellow hypoPARAs that I came to the realization that him leaving was probably the best thing. He was not supportive of my condition. Instead, I saw the love between these people and it was beautiful. I realized I didn’t have that. And that is something I want as I embark on my future journey.

At the conference I met so many people who I’ve only known on social media. It was as if they were long lost friends. We talked and shared stories. Everyone had a different story, but they all had the same common denominators.

What I did notice sitting around the room is that there is no face of hypoPARAthyroidism. They are young and old. They are surgically-induced or they were born with it. We are big or small or somewhere in between; come from different demographic and social backgrounds; we share similar stories, but no two are alike. It was so comforting being around this diverse group of individuals who all share the same battle with maintaining our calcium, phosphorus and magnesium levels. There was a feeling of camaraderie and community. We all felt we belonged. It was beautiful and I enjoyed everything I learned and making new life-long friends who just get it.

A few days before I had left for Denver, I received an email from Columbia University's research department and said I was selected for the study. At the conference I was able to talk to Liza and Dr. Sanchita of Ascendis Pharmaceuticals about the drug being studied. Although they could offer limited information, they were passionate about the product. They listened to the patients. About what it was like to live with hypoPARA and what it does to the person. They asked how and why and truly cared about each of our individual stories. Ascendis Pharmaceuticals claims their core values are “Patients, Science, Passion” – that was evident in each interaction I had with every member of the Ascendis team. I believe there are no accidents and that’s why I was seated next to them.

I was so happy to finally have something to write in my I am Grateful journal. Of course, with my hypoPARA brain fog, I ended up leaving it at an information desk… but I quickly remembered. I wrote so much. Learned so much. I really did feel Grateful to be surrounded by this group of strong warriors fighting this rare disease.

On the plane ride home, I realized something very important; Living with hypoPARAthyroidism is the worst and I wouldn’t wish on anyone. But without it, I never would have had my children. I conceived my daughter one-month post the surgery that gave me this disease. She was my gift and although living with hypoPARAthyroidism is awful, being a mother is the greatest gift I ever received. I was blessed with my son two years after she was born. They completed my life and now I’m going to fight and live a healthy life to show them I can do it. That’s what I’m hoping being a part of the TransCon PTH study will do for me. Make me be a normal person again. And show them how strong I am.

Before the HypoPARA conference I had received another email. It was an invitation to attend the Biotechnology Innovation Organization’s patient Advocacy Summit in Washington DC. They read my story that was published by Patients Rising back on World hypoPARA Day and thought I would benefit from attending. They reached out to me on a day I was feeling very sad about my life and my situation. I felt like giving up. But then this email came in and I realized this is an opportunity for me to learn and in turn help others. If I could help one person, then it was worth not giving up. So, I decided that October of 2019 was going to be spent turning obstacles into opportunities. I look forward to writing in my I am Grateful Journal again because that’s exactly what I am, Grateful.

As I embarked on my journey to Washington DC and the biotechnology patient advocacy summit, I was feeling nervous. What was I doing attending this conference? Who am I and why was I asked to go? I was sent on a scholarship and it was an honor I was chosen, but I’m just a regular person who was dealt a bad hand.

As the plane approached the airport, I saw the Washington Monument and The Capital and it looked beautiful. I don’t ever remember seeing that view from the plane. I realized this is a new perspective and that’s how I’m going to view this journey and new phase of my life.

As the plane landed, my cell phone rang. It was Rukshana and Beatriz from Columbia University saying “we got the okay. You need to be in New York next week!” I was so excited! It started my trip on the right foot. And once again, the timing couldn’t have been any better. Everything happens the way it should.

The Washington Nationals were playing In the World Series and it got me thinking about where I was just last year at this time. I had been in Boston to see Dr. Michael Mannstadt when the Red Sox won the World Series. I even caught the parade! But at that time I was feeling down and defeated and sick. I had just lost my father, my family was falling apart and I was just lost. And now, just one year later, I turned it around. There were feelings of hopefulness and optimism. I was gaining weight and was comfortable being alone on my journey. No more sitting home crying. I was living the best life I could with the hand I was given and I was taking good risks. A new version of myself was growing, and I liked what I was seeing.

What are the odds that I would be in a different city two years in a row for reasons unrelated to baseball and yet the team from the city I was in won the World Series? The Nationals were down 2 games to 3 but ended up winning both road games to win the World Series. I must be a baseball good luck charm. The city was buzzing and everyone was so happy. It was a great time to be in Washington DC and I just felt so grateful.

As I awoke to the first day of robust learning at The Biotechnology patient Advocacy summit, I sat among a room full of accomplished individuals. There were so many speakers on various topics. Many rare disease groups were represented and the people who started them stood on the stage and spoke about how they made a difference. They spoke about conditions we have all heard of, even though they were rare. I realized we knew about these diseases because of their voices.

No one there seemed to know about hypoPARAthyroidism. At that moment I realized it was my mission to let the world know about this rare disease. I was given the tools to do it. If I can think of one word to describe how I felt after two days of learning, it is INSPIRED. Inspired to speak for the 70,000 individuals who have this condition. To make hypoPARAthyroidism a household name – I know it’s possible now. I felt I was asked to attend this summit for that purpose. This reinforced to me that everything happens as it should. I made a decision that I want to be on that stage one day speaking about how I brought awareness about hypoPARA to this nation. This is my goal as I enter the next phase of my journey.

I was feeling so grateful that I got to write in my journal again. There were amazing people and I made contacts. I truly was inspired and left the conference feeling optimistic that I can make a difference.

When the Bio conference was finished, I had half a day to explore DC. I would go to the National Holocaust Museum. In fact, I was the first one there when it opened.

I walked around the museum teary-eyed. To see what these poor individuals faced and had to endure was heartbreaking. I say I was dealt a bad hand, but I realized I was not, they were. My problems paled in comparison to what they witnessed and experienced. It was eye opening and really made me change the way I think about life and my situation. This empowered, motivated and inspired me to make a difference in life, to not be a prisoner of my past, and springboard to do something that will help others.

Washington DC was a life changing experience and I am forever grateful for the opportunity that came my way. I am capable of making a difference in this world.

As I returned home, I realized that my problems in my personal life are nothing compared to what I learned and saw in Washington DC. I decided that this is my new beginning (a great time for creating a journal). The past is the past, but I sure can make a better future, not only for myself but for others. I realized nothing and no one can bring me down or stop me. So, I got ready for the next part of my journey, New York City and the TransCon PTH study.

I was feeling empowered, optimistic, happy, hopeful, strong, inspired, and free from all the stuff that had been weighing me down this past year. It’s like I was a new me. And people started to notice. There was a clear vision, a moment of clarity, of what I wanted, where I wanted to go, and which direction I needed to head to be the best version of myself. I left all the negativity in my life and all the things that didn’t bring value to my wellbeing in Washington DC.

I felt like I was given a new life, but it wasn’t that, it was hope. Hope was an emotion I’ve never felt before. I got proactive. I even leased a new townhome that I will move into at the start of 2020. I’ve never lived alone before and I look at it as an important part of this new journey. I’ve been seeing friends and letting new people in, which has helped to enrich my life.

I had to lose myself to find myself. It feels great to live my life enthusiastically! I didn’t bounce back, I took a huge leap forward, mentally, emotionally and spiritually.

I arrived in NYC, filled with optimism. I spent a full day at Columbia University Medical Center filling out lots of forms and having lots of tests done. They had to see if I actually do qualify for the study. I was so grateful for Rukshana, Beatriz and Dr. Rubin who all took the time to make me feel comfortable throughout this process. What started as an email to Dr. Karph back in February 2019, led me to this place. When I was done, I had to wait to see if I formally qualified and could be one of the lucky 40 in this phase 2 clinical trial.

And then I got the email. I was patient number one for the TransCon PTH clinical trial with Dr Rubin at Columbia!

See, I know how good it feels to be on parathyroid hormone. When it was taken away from me back in 2016, I just never felt the same. Now I can have that feeling again! I’m not even on the drug yet and I already feel great. I’m leaving a chapter of my life behind and starting a new one. I am optimistic that the trial will provide positive results and not only help me but help the other patients in the world. Will I be a “guinea pig”, sure, but that’s okay, I actually had one as a pet when I was a child.

I am beyond grateful for this chance and all the opportunities that have come my way the past few months. I actually did what I set out to do in October. Turn obstacles to opportunities.

So, as this new chapter in my book of life starts, I wanted to share this story. The reason being, I want to give people hope. Something I never experienced. I want you, reading this, to feel hopeful. Hopeful for a better today. A better tomorrow. A better forever. You can’t change your past, but you don’t have to be a prisoner of it. I am so glad I didn’t give up. I am grateful.

My story will continue….

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