Lauren
“There are many other people like me who are living with rare diseases who also had COVID. Yet, there has been no research on COVID affecting people with disabilities and I Imagine there never will be. While this is upsetting, it’s the truth, we are always left out.”
NEW YORK, NEW YORK: I was born with MacCun-Albright's syndrome. It is a very rare endocrine and bone disease. My pituitary glands and ovaries work independently of each other. There are less than 6,000 people in the United States and around 9,000 globally who are diagnosed with it.
I was born with McCune -Albright's syndrome. There are less than 5,000 people in the United States and around 8-9,000 globally who are diagnosed with it.
At five years old, my trajectory was downhill as my bones couldn't hold my weight anymore. I was headed for a wheelchair but I decided that I would never use one. It was a lot of work and a lot of screaming and crying because it hurt. But, I didn't know another life. I just knew that my life was going to be more difficult.
Now, I am a disability advocate, the author of the book Unstoppable In Stilettos, and I work for Johnson & Johnson as the Director, Creative Partnerships.
Before I got COVID I was feeling good physically and emotionally. I take good care of myself. I believe in vitamins, working out, doing the right thing, and seeing the right doctors.
I heard about Coronavirus in early January in Davos, Switzerland while at the World Economic Forum for my company Johnson & Johnson. On January 20th, the day before we left Davos, our Chief Scientific Officer had a meeting with the WHO about Coronavirus. So, because of my job, I had an early education about it but it was mainly in Asia at that time.
I heard about Coronavirus in early January in Davos, Switzerland while at the World Economic Forum
There were precautions given for people 60 plus and people with autoimmune diseases. But, there were no recommendations given to people with disabilities — nothing from the CDC or from the World Health Organization. We are a community that is constantly forgotten about as if we are invisible but being disabled is the largest and most diverse group in the world. I think that we are constantly not seen in the world and we are waiting for our moment. In the meantime, being invisible is frustrating. It feels awful that we are not considered.
there were no recommendations given to people with disabilities
I went on vacation to Mexico in February. Before I left, I went to Duane Reed to buy masks. I thought we should wear a mask when we were on the plane. The air in planes is always so stale and disgusting. I gave masks to my two friends with whom I was going on vacation.
On the way home on February 28th, an older couple sitting next to me coughed. I immediately put my mask on. I asked them if they had a mask and if they could put it on. There was also a baby on the plane who was coughing. I was very scared of what was happening on the plane with people coughing. I even took a picture of myself in the mask and sent it to my friends.
I got home and life went back to normal. At work, we covered Coronavirus, but I never thought that it was going to be in my “backyard”. Working at J&J, you hear about all the health crises around the world, like Ebola, constantly. But, you don’t expect to be diagnosed with it. I never thought that I would get COVID.
you hear about all the health crises around the world, like Ebola, constantly. But, you don’t expect to be diagnosed with it. I never thought that I would get COVID.
On Friday, March 13th, we were told the office would shut down and I should take my laptop home. We were also told that the city might shut down. I have lived here through 9/11, blackouts, and Hurricane Sandy. I thought the city might shut down for two days and we’d be back to work on Tuesday. I never thought nine months later that I would still be working from home.
The next day, on the 14th of March, things got real when I went to an outdoor restaurant with some friends and they told me that restaurants had shut down to 50%. It felt like the apocalypse coming because in New York City restaurants never close.
Next, I heard the gyms were also closing down. I had to go to Pilates on Monday morning as that was going my chance to get a proper in person workout in. They gave wipes to everyone who walked in. I am neurotic about cleaning as it is. On my way back home I also bought a hand sanitizer. But, I didn't think much about it.
On Tuesday, I woke up and had a sniffle. I thought it was probably allergies as it was March. Maybe I left the windows open. I couldn’t remember.
By Thursday I was not feeling good. I felt tired. By the end of the day, I started getting a cough. When I woke up on Friday, I felt tired again. On the 21st, Saturday night, it got hard for me to breathe. I felt like something was wrong but I didn’t know what it was. I never felt like that before. I did not think it was coronavirus.
I could not taste anything. I was not hungry. It was hard to breathe. I could not smell anything. My friend thought it might be the flu, but I didn’t feel like I had flu symptoms. I had a bad stomach ache and a terrible headache. But, I didn't have sinuses like you have with the flu. I did not have a fever, even though I had the chills at that point, but no fever.
On Sunday, I went to Urgent Care at 8:00 am. I was the first one there. I wore an N95 mask. I told them about my symptoms. I also told them how I felt I might be having a fever because of the fluctuation in my body. It was hot and cold every now and then. But, they told me that I did not have a fever. I had a perfect temperature.
They tested me for the flu and for strep throat. Both came back negative and therefore, They sent me home and asked me to come back if I did not feel better in 24 or 48 hours.
I was getting worse every day. On Monday I still felt awful and called my primary doctor, but they were closed that day. They asked me to come the next day, Tuesday, as they would open for a few hours. But, when I called them on Tuesday they were already booked and had no COVID-19 tests. . They asked me to come on Wednesday and promised that I would be their first appointment and will keep a test for me take.. That night was really, bad. My breathing got worse by the moment.
Finally morning was near. I woke up, took a few sips of air, got dressed and got in my car and drove to 86th street. Getting out of my car, walking across the street took the wind out my sail but I had to prove to myself that I could do it. So I managed to climb a flight of stairs, and as I reached the top, I had to lean over because I could not catch my breath and became extremely dizzy. They were shocked to see me, as I looked like a ghost, completely white and immediately asked me to sit down.
A few minutes later they checked me, took an X-Ray which showed little black dots on my chest. My doctor was skeptical and told me that I might have coronavirus. It surprised me. Now, it was real. He told me that my oxygen level was really low, 91 and I need to be careful . He said I would have to get admitted if it went below that. I refused to go to the hospital because I heard stories. If I went, they would treat me as a pincushion, as usual, and I never wanted to be treated that way.
Coronavirus became part of me. Now, it was real.
They told me that they have only 50 COVID-19 tests and that they would give me one. I was shocked to know the number of tests they had. They did the strep test and the flu test before they could even give me a coronavirus test.
They told me that they have only 50 COVID-19 tests and that they would give me one.
They gave me oxygen and the doctor asked me to quarantine. He was very adamant that I stay inside my house because he believed that I had COVID, and told me that I was contagious. My doctor said, buy everything I wanted on my way back and asked me very firmly not to leave the house till the results of the tests were back. I asked him why I was not tested in urgent care when I went there. He explained that there were not enough tests. At that point, if you did not have a fever or sore throat, they were not testing you.
He explained that there were not enough tests. At that point, if you did not have a fever or sore throat, they were not testing you.
My test results came back positive after two days. I couldn't believe how fast it came back. At that point, I was still getting worse. I didn't eat for almost two days. On Saturday, in the middle of the night, I woke up and my face was white as a ghost. My lips were white. I had the worst diarrhea in my life. It was a color that it shouldn't be, cream-colored. I sat on the floor as I thought I was going to pass out at 2 o’clock in the morning.
Thank God I had an orange juice in my fridge as I needed the sugar. I drank it and finally started to feel a little bit better. I got some color back in my face, but I was shaking and my teeth were chattering. This happened the next night again. But after that, it started to get a little bit better, except for the breathing. The breathing was still bad. That Sunday I got back my sense of smell and taste. I didn’t have them for a week. I was still not feeling great, but starting to get a little bit better but still had breathing issues and the cough was getting worse. Other things started to come back except for being tired.
I told my building that I had COVID. They were nice and supportive until I had another doctor's appointment 14 days later and had to use an elevator. Usually, I would call them and they would send me the elevator and then I would go down. Afterward, they would clean the elevator. But, that day when I called them to send the elevator, they said they wouldn’t let me leave until I got a negative result. I replied to them that if they didn’t let me leave, I wouldn’t get my results and they couldn’t keep me against my will or kidnap me. It made me feel awful. It was demoralizing.
when I called them to send the elevator, they said they wouldn’t let me leave until I got a negative result.
They were upset because they thought that I got COVID inside the building and didn’t tell them and they had to call the cleaning crew which was very expensive for them.
I was shocked. I said I didn't have to tell them or anybody, it's against HIPAA laws. The fact that I told them showed I was being a good resident. He asked to call building management to see if they would let me go. I told them I was not calling anyone and would leave for the doctor's appointment as I hadn’t left my house in 20 days. The management called me and told me that I could leave, I just had to wear masks and gloves. I told them I was already wearing them, and I was already late and I couldn’t afford to be late because there’s only one person allowed at a time in the office. I was crying hysterically because I felt I did something wrong.
I hadn’t left my house in 20 days.
I finally went to the doctor and when he checked my oxygen level it was 96. It was better but still wasn't great. He gave me another test and told me that he wanted to prepare me because 50% of the people who he has retested were still positive. He also told me that he did not believe in the 14-day quarantine because the tests were again coming positive for most of the people. And yes my results were positive again so he made me quarantine for another 7 to 10 days.
I went back another week later and tested negative on April 29th. So from the 17th of March through the 29th of April, six weeks, I was in it.
But, my journey with COVID-19 wasn’t over.
My disease started acting up around the beginning of May. I had cysts in places that I haven't had them since I was a kid. I was in so much pain. I had cysts on my lower legs — two on the left and one on the right. They were so odd. That never happened to me. They were coming and going for 3 to 4 weeks.
In the second week of June, I was in so much pain that I called my endocrinologist and asked to see her immediately. I was not ready to walk, I was in so much pain, which is so unlike me. I told her about what I was going through that I have had a total of four to five cysts in a month. They were painful. My legs were swollen.
But she told me that she was not seeing patients yet but could do a teletherapy appointment. We did it and I showed her my cysts and legs which were swollen. First, she took my blood work, and then my bone turnover. The blood work took about a week to come back and that's normal because I have to get various kinds of tests. When the results came back, my bone turnover was high, but not good.
All my vitamins were low. They were depleted of vitamin D, vitamin B, and phosphorus. She asked me if I still get the headaches to which I told her that the headaches were really bad. She told me that those are because I am low on vitamin B. She asked to get a B12 shot immediately of the highest dose available and told me that I would feel better after it. She also asked me to get 4 rounds of those week after week. She told me that I have never been depleted before and that I am not generating the vitamins that I need, which is probably because of COVID. She said that she can’t prove that but she is sure of this. I was taking my vitamins regularly then too. But she told me that my body needs a very high dose of vitamins. I got three or four doses of B12 and some other immunity injections.
She told me that I have never been depleted before and that I am not generating the vitamins that I need, which is probably because of COVID.
A combination of taking phosphorus, vitamins, and injections helped my inflammation go away. Now the pain has stopped. But, I still have some breathing issues. When I wear the mask and walk for two blocks. it's very hard to catch my breath. I have to sit to get my breath. That had never happened to me before. Not that I ever wore a mask before, but it still takes me a long time to get back to breathing.
It's been a long journey.
There are many other people like me who are living with rare diseases who also had COVID. Yet, there has been no research on COVID affecting people with disabilities and I Imagine there never will be. While this is upsetting, it’s the truth, we are always left out. One day we will turn this invisible community into the invincible community til then let’s respect the virus, wear your mask and be safe for not only yourself but for those around you.
On a positive note, I’m thrilled that science & medicine are having their moment. The time is now to champion science and all the work that these men and women do which in the end helps us all breathe a little easier.
Symptoms: Loss of taste and smell, fever, chills, feeling hot and cold, headache.
Treatment: B12 shot
Lauren works as a Director for Johnson & Johnson. She’s the author of the book Unstoppable In Stilettos, keynote speaker and a disability advocate.
