My story with HS begins in 1968 at twelve years of age. I awoke one morning with three large cysts (boils) on my face.
I remember this clearly as I did not go to school because of feeling embarrassed and the one on the side of my nose closed my eye so that I could not see. The other two were located on my cheeks and were the size of a baseball. The first doctor I saw was my family doctor for a year and a half. He was not able to get it under any control and referred me to a Dermatologist.
All the cultures indicated no bacteria nor infection as to the cause of these boils.
I remember having three large gauze 4×4 patches on my two cheeks and my left nose (eye). I was seeing my doctor three times a week. I had to take public transportation to visit the doctor for the next four years, extremely embarrassed and humiliated. One way of minimizing the inflammation was to use a syringe, stick the needle in the boil and remove the fluid. This took place for a year and a half until he just gave up. He never gave me antibiotics because all the cultures indicated that no bacteria or infection was present. Returning to school was two months after the inception and I learned to remove myself from friends as they did not know how to approach me and ask what had happened to me. I could not explain to them what I had because no one was able to tell me what I had and why I had it
After a year and a half of seeing the family doctor I was referred to my first Dermatologist. Charles Reiter Jr. Diseases of the Skin – Skin Cancer – X-Ray Therapy specialist. Dr. Reiter would treat me for the next 17 years of my life with HS, although no diagnosis was assigned he decided to call my ailment as Cystic Acne and treated my problem as such. Once again all culture work came back negative and he was not sure how to proceed but follow medical protocol of the time. Every visit was first sending in a sample for pathology work, then an injection on my forearm followed by ultraviolet light treatment, with a sulfuric solution that was applied twice a day via hot compress twice daily, two types of antibiotics, an acne lotion with a return visit in three days. At some point my case was discussed at regular meetings of National Dermatology Association meetings, with Dr. Reiter returning to try new treatments for the next four years. As time went by the boils began to spread to my neck, back, rear end, and armpit. I was forced to end my athletic career in High School as I could not endure the pain associated with these boils.
At one point during the treatment the boils on my face were so serious that he decided to make an incision on them, place a small piece of sterilized rubber band to maintain an opening on them so that I may milk them every night before I went to sleep. My mother would sterilize the rubber band, insert it in the opening, cover with gauze and milk them up to two times daily. This treatment went on for first two years while seeing Dr. Reiter. I would also have I&D’s on my neck, back, rear end, armpits, and groin for the next 17 years, I still did not have a diagnosis of HS and 19 years had taken a toll on my life. During my college years I was also diagnosed with a Pilonidal Cyst that took three surgeries over a time period of three years. Now I had a surgeon, Dr. Sammis to help in my struggle with this disease that had no name. Having these surgeries over the years had placed me in a position of needing to work, no insurance meant I could not finish my final year of college. I had already been working since I was young but not working enough to pay off my medical debt and continue my college degree.
Seeing Dr. Reiter and Dr. Sammis from 1970 to 1980 finally ended when I just gave up finding any solution to arrive at a diagnosis and treatment.
The next 20 years were going from doctor to doctor trying to find someone that could help me and finding a diagnosis. Doctors tried everything that they new but nothing worked. The 80’s and 90’s were difficult as I would go through this time hiding the disease from all family and friends. I learned how to accept the pain and move on with my life as best I could.
I saw Dr. Reiter for the last time on November 11, 1980. He advised me to continue my search for a diagnosis because he had arrived at the point that he was no longer able to help me. Dr. Reiter closed his office in 1987, retired and passed shortly after that in 1995. Attending his funeral was a very sad day for me as he had always encouraged me to continue fighting and searching for a diagnosis.
PART 1 of 2: The “HS Wolf” is currently a HS Awareness Activist and Advocate who has sacrificed literally decades of his own years for other patients. He is proactive and always has been for those who need help within his own local community and family – extended or not. The Co Founder of the Spartan Warriors of HS he has been Ron’s mentor since the day he personally discovered HS within his own life and body. Hidradenitis Suppurativa in 1968 Part 1 of 2: the “HS Wolf” by Emanuel Enrique Llaguno is the “HS Wolf’s” gift to patients worldwide who currently may not know why they are sick or that they are not alone. Part 2 to be released for publishing soon here at http://hsawareness.org.
Tags: Dermatology Diagnosis Diet Patient Stories Treatment