Inspiring Hope: Noel’s Story

Welcome to our “Inspiring Hope” series. For the next several weeks, we’ll share patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our first story comes from Noel Mudibo in Kenya.

Noel Mudibo is a pemphigus vulgaris patient from Kenya. He is also a passionate volunteer social worker with 11 years of experience. He has a BS in Financial Economics, Diploma in Petroleum Geoscience and Accounting Level 2. Additionally, he is a fiction writer currently writing about his childhood friend that was killed by the police in a Nairobi ghetto. He recently finished writing a compilation of traditional African children stories. This is his story.

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Since childhood, I have had several health challenges. I had intestinal surgery at the age of two. At the same time, doctors discovered that I had an eye problem. Immediate action was not taken due to my parents’ financial constraints, which caused me to pay a heavy price. Years later in 2010, an ophthalmologist discovered that I had dual keratoconus, and they performed corneal transplants on my left eye in 2012 and my right eye in 2013. In 2014, I embarked on a transformative academic journey.

The turning point of my life happened in January of 2016. I developed lesions all over my body, including painful lesions on my tongue and groin, and blisters appeared in my mouth. I also suffered from severe constipation and bloody stools, and I needed to take strong painkillers. I experienced fevers, body weakness, and fatigue. Whenever I swallowed certain food, I felt a lot of pain. My skin became pale, and I developed brownish spots all over.

At the time, I was still in college. People thought I had HIV, but my friends took me for testing, and I was negative. I was still in a lot of pain and surviving on pain medication. I went to a clinical officer who examined me and told me I was suffering from an autoimmune condition called pemphigus vulgaris (PV). I was prescribed prednisone, but it did not make much of a difference as I continued to get lesions. At one point, my flare up was so bad that I had to be admitted to the hospital for two days.

In 2018, I saved 40 dollars and went to see a skin specialist who also told me that I had PV and that I needed an urgent treatment. He prescribed a combination of steroids. I felt better when I started the medications, but not completely. I still had frequent, severe flare ups. These flare ups would keep me grounded for several days and out of class.

I started researching pemphigus conditions online. I read about the research that had been done on treatments, including testimonies of people who have had pemphigus. Some patients died, some went into remission, and some of their conditions were still very active. During this research, I came across the IPPF. I also started searching for other people in Kenya who were suffering from PV, and I found quite a few. Some of them had very serious conditions that they succumbed to. I was very sad about that.

I continued my efforts to connect with the IPPF, and I started reading PV articles and testimonies with positive stories about people who had gone into remission and whose lives were almost back to normal. This information encouraged me a lot. I started communicating with the IPPF Outreach Director, Becky Strong- herself a PV patient in remission.

The articles on the IPPF website became my daily religion. I started reading them routinely and sharing them with other PV patients in Kenya. Some patients are not educated, so I have had to interpret the information for them. There are also some people in Kenya who believe PV is due to witchcraft.

Even though medication is quite expensive here and I sometimes go months without getting required steroids, I live a positive life full of hope and faith. I hope that one day, this condition will go into remission like Becky Strong.

During the COVID-19 pandemic, I have had challenges, but knowing that my immune system is low, I adhere to directives to stay indoors. In addition, I have recently filled out surveys provided by the IPPF. My most important request is for the IPPF to open an African office in Kenya. So many people here are suffering from PV, but they don’t have proper information.