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World Health Day: Interview with a Cushing’s Syndrome Warrior

Posted on by sochgreen Admin 0 comments

7th of April each year is celebrated as World Health Day. This year, we are interviewing our founder Priyanka Nagpal Jain, who has been a warrior in the face of Cushing’s Syndrome. Cushing’s Syndrome is an umbrella term used to refer to the signs and symptoms that occur as a result of prolonged exposure to cortisol, which can be a result of a tumor or taking external steroids. Some of the symptoms particularly affect women sufferers’ menstrual cycles. In this interview, Priyanka shares her journey with Cushing’s Syndrome and the several difficulties that she has had to negotiate as a result of this.

Q: What were the initial symptoms that made you realize that the symptoms were more than just “regular irregularities”? What were your next steps?

Though irregular menstrual cycles are a common symptom of Cushing’s Syndrome, my cycle was always regular. However, I faced other problems like horrible acne, acne that would stay for 7-8 months, weight gain, moon-shaped face, hair growth, weak bones and muscles, and multiple styes on my eyes.

I was clueless; all the doctors I consulted concluded that I had Polycystic Ovarian Syndrome, or PCOS, until the day I slipped in the bathroom and fractured my wrist. The bone shattered, and the doctor wondered how I had managed to do that at the age of 33! Tests showed that I was osteoporotic, meaning, my bones had become very brittle. This was highly unlikely to happen at my age. I was ordered further tests, which showed that I had Cushing’s Syndrome.

Q: Receiving a diagnosis can be both relieving as well as heartbreaking. When did you first receive an actual and accurate diagnosis, and how did you react to it?  

Once I received my diagnosis, it was clear that this could be due to external steroids (which I never took) or due to a tumor in the pituitary gland. Once I came to know what it was, I turned to Dr. Google and was terrified. However, my endocrinologist ordered an MRI, which confirmed that I had a tumor. This was the source of all my misery! Though I was anxious, I was relieved thinking this might be the answer to all my questions.

Q: How difficult was it to manage your work, alongside managing your disease?

Managing a disease that makes you look “ugly” is hard, especially if you live in Delhi and have a YouTube channel. I have been at the receiving end of mockery from friends and relatives who blamed me for not taking care of myself! Socializing was hard, but I managed to ignore their comments and carry on with my life.

Work was difficult too; I continued to take sessions and attend meetings. However, I noticed that people wouldn’t make eye contact with me when I was speaking to them. My YouTube channel, Hygiene and You, suffered a lot as there were times when I just couldn’t get myself to face the camera. I would wait for my acne to settle down or the bloating in my face to lessen so that I could make a video.

Q: Who or what were your major sources of strength during this time?

My relationship with my husband Pranav and our marriage were the biggest strengths for both of us. My husband also suffered with me and we came out of it together. I tried so many things trying to heal myself, and Pranav supported me in every single step. I changed my diet as I found that a plant-based diet was helping me control my symptoms. My husband helped me make the switch. We only went out to places where I could get food that met my requirements; over time, he also slowly switched to my diet. Eventually, I had to undergo surgery to remove the tumor, and he was with me throughout.

Q: What is your current health status? What are the active steps that you’ve taken to keep your disease in check?

After the surgery, my endocrinologist and neurosurgeon said that the tumor will most likely come back in a few years. I joined Facebook support groups for Cushing’s Disease and read stories about how several people saw a recurrence of the tumor during the post-surgery recovery period. Some were on their second or third surgery. This scared me, but I continued with my plant-based and preservative-free diet and followed a natural lifestyle. I practice yoga and pranayam. Sun-gazing and sunbathing are also an important part of my routine. I still get easily tired and can feel the weakness in my bones, but I see a huge improvement. My face looks almost the same as before!

Q: There is a widespread idea that women’s reporting of pain is often ignored or downplayed by healthcare professionals and dismissed as something normal. How was it for you?

  • Me: Why am I gaining so much weight? My face has become very round; it looks so disproportionate to the rest of my body!
  • Gynae: What have you done to control your weight?
  • Me: I run 5-10k 3 times a week and eat a clean and healthy diet.
  • Gynae: I don’t believe you. You have only gained 10kg; women who have serious problems gain over 30-40 kgs.

Hearing that from my gynecologist tore me apart. I felt miserable and helpless. Anyway, I am glad that I finally got the right diagnosis.

Q: We would love for you to share a few inspiring words for our readers who may be struggling with health issues.

If we look from the perspective of medical science, we can name thousands of diseases. But we need to stop worrying about the name of the disease and instead, focus on improving our health. We can take charge of our health by following a healthy, natural lifestyle.

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