Keloid Encounter, a True Story:

My Keloid History

Hello, my name is Alex and I am 25 years old. Back when I was 6 in 1992 I got the chicken pox. It was on the day I had a dance festival at school and I had to miss it because I was itchy all over!! Long story short, the chicken pox lasted for about 2.5-3 weeks after using tons of calamine lotion.

After the chicken pox faded, I noticed that one on my neck refused to flatten. Several months later it started to grow into a raised bump. I told my mother about it because it worried me. After all I just got rid of my chicken pox, I didn't need something else to take it's place!

Fast forward 7 years later to 1999 (the year of my first plastic surgery). At this point the keloid has grown from approximately 1 cm to 1.5 inches. The surgeon removes the keloid using basic surgical instruments. The surgery took place in the doctors office (he had a small operating room in the back). After a few hours of surgery, I wake up and I find my neck is stitched from the outside. The area where the keloid was is now a closed lumpy slit.

About Two weeks post surgery I go to have the stitches removed and then 2 weeks after that I begin cortisone steroid treatment (which is supposedly able to reduce the growth pace of a keloid that may return after surgery is done). These shots were painful as hell!!!, and the scar area had to be injected from several spots for the treatment to be effective. I always cried during these treatments, because they were extremely painful and I just hated needles to begin with! This insane treatment went on for 6 whole months!  But lo and behold it did nothing to prevent the return of yet another keloid regrowth! I was pissed!

In 2000, I go to have my second plastic surgery by the same surgery in a hospital this time (formally known as Booth Memorial, located in Flushing Queens NY). Things were done on a much larger scale here. There was a team of doctors that helped prep me for surgery (set up and iv etc.). However the surgeon was the same. Long story short, the surgery was unsuccessful due to this doctor using the same useless method he did the first time! The keloid grew back again and this time it was way uglier and larger than before! The reason for this was that it would heal at the size of the scarring area and then raise above the skin. One thing about keloids that I've researched over the years is that they can stretch outside the scar area and even join with another neighboring keloid.

Anyways, back to my story. In 2001, I had my third surgery at Beth Israel Hospital in Manhattan and this time I received laser treatment on the keloid.  Laser surgery is a method the surgeon uses to burn the keloid off. There were a few risks with this surgery due to the laser involving small amounts of radiation, but thank God nothing bad happened, or maybe something did. In fact something really bad happened because once again after the surgery and 6 more months of useless and highly painful cortisone injections, as well as me gaining muscle mass that I didn't need at the time, the keloid had reared it's ugly head once again!

I was beginning to think that doctors in America were just plain idiots and that the medical industry was just a capitalist business scheme to make money! For the most part I was certainly right!

I decided to take a break from surgery for 6 years because I felt frustrated and hopeless that there wasn't a single doctor out there who could help someone with my condition. Every day of my life from 2000 to 2007 I had to deal with the constant ridicule and criticism from the ignorance in people that surrounded me. There seemed to be nowhere I could go that had people that accepted me for who I was, and not what I looked like. It was pretty sad really. Only my family and the true friends I had at the time had my back, as for the rest of the world...it was more of a big "F-U" from me to them!

I began to care less and less about others and more about myself.  I was deflecting their judgment with raw hatred! I didn't have a girlfriend, nor wanted one for the simple fact that at that time my mind was on more of a "it would never last or "never happen for real" mode. I used this opportunity to focus on my education because during this time I had been attending college (NYIT, starting in fall of 2004) and I had no time for distractions!

Fast forwarding to summer of 2007. I had been referred by a customer/doctors assistant at my job to book an appointment with Keloid Specialist. He was the first black doctor that I had treat my condition. I kind of leaned towards him because one thing about keloids is that they are usually more common in people with dark skin pigmentation (black, Indian, Hispanic, and even Chinese). However white people can be prone to keloids too but it's never as severe.

Anyhow, I decide that I would undergo another surgery for the simple fact that for once I was dealing with a specialist, and also because he was trying a new method that still involved laser treatment but also radiation therapy. At this point my keloid condition was more apparent because now I had them almost everywhere (my face, back, buttocks, legs, shoulder etc). They just seemed to sprout up out of my skin as if they were pimples, it was crazy and irritating to say the least!

In early October of 2007, I had undergone my 4th surgery, but this time I had the keloids removed in 2 areas; my neck and my face (left side). The face surgery was more of a surprise and I didn't find out that it was done until i woke up after the surgery. I remember having the surgery on a Tuesday, so for the 3 days following the operation I HAD to go for radiation treatment! It was a must! I also remember that at this time, I had to carry around a drainage bag that was taped to my face connecting the drainage tubes into my face and neck! It was probably the most uncomfortable process in my life at that point! I felt like an alien it was so weird carrying this bag around.

Anyway, I had to so I did. The radiation therapy lasted about an hour each time I went. The process included the radiologist making metal mold cutouts of the area that radiation would be applied to. They got these cutouts from areas of my scar that they had outlined. The risk factor for this treatment involved staying away from direct sunlight at all costs to prevent symptoms like: darkening of skin and loss of thyroid hormones resulting in slow metabolism, which would then result in weight gain...I said "hell no to that!" "I'm staying outta the sun!".

After the radiation treatment I had went several weeks later to get the same useless cortisone shots in my neck and in my face (and for those of you who don't realize how sensitive your face is to pain, then you will if you ever have to take an injection in it!).

The stitches that Dr. Morrison used were the self dissolving type and they were on the inside of the scar. This meant that they dissolved more and more as the keloid healed. I was also required to wear Cordran Tape on the scars which was a cortisone alternative that was used to constantly keep the scar suppressed and flat. This worked for some time but it began to become a problem on my face when my facial hair started to slowly but surely return (after radiation therapy). The tape and the hair didn't sit well with me and it began to irritate the keloid on my face more and more. I finally told the doctor this and I stopped using the tape. Unfortunately, this cause an insanely fast regrowth of keloid on my face! It seemed to grow faster because of the hair that was growing back!! I was really mad and disappointed at what the healing process had turned into. It was more like an outbreak!!!

Years pass and this keloid problem has gotten out of hand. Not only have the face and neck keloids grown back, but the ones on my butt (4 of them), the ones on my inner thighs (2-3 of them), one on the right side of my face now, the one on the upper right side of my back near my shoulder have all grown seriously huge! I'm talking about the biggest one being around 4 inches in diameter and about 0.5 inches in thickness! It was hard for me to sit and to lay down, the keloids on my butt and shoulder would constantly become prone to infections and they would get inflamed!  The ones on my neck and face were also pretty large in overall size! The neck keloid wrapped around my neck and was very thick and lumpy.  After several months it began to join with the keloid on my face that had been operated on. The keloid on my right cheek (which till this day still hasn't been surgically removed) is almost a perfect circle reaching over 2 inches in diameter and a little over one centimeter in thickness.

Keloid infections are probably the only reason I think I have an insanely high threshold for pain! Just imagine a sea of lava running beneath the surface of the skin, mixed with hot sauce, and needles! That's how it felt during the duration of an infection. And these infections could last anywhere from 2 weeks to several months! Yes, i said several months, because it has happened to me before.

Fast forwarding to late September of 2010, I was once again approached by another doctor who noticed my condition. He was a bit aggressive as he cut me off on my way to help a customer and told me that I needed cryotherapy treatment asap (however, I was glad that he seemed to care this much to go out of his way to help me). He said that with keloids at the size that I had them, it would be impossible to treat without freezing them to kill the tissue. That's exactly what cryotherapy involved; the application of liquid nitrogen directly to the keloid for several minutes until the entire keloid is frozen hard and white. After the freezing, the keloid is left to thaw and during this process it swells and resembles a boil. Once the skin covering the keloid opens up, the water from the melted ice as well as some blood from the keloid drains out. The drainage is probably the most uncomfortable and disgusting process that has to be dealt with (it can last anywhere from 4 days to a week, depending on the size of the keloids before it begins to darken and harden like a rock), especially due to the fact that I often have to work and be up and about.

I will tell you this, this treatment has made me spend more money on laundry than I ever thought I would! No lie! The process itself is pretty painful since liquid nitrogen is most likely the coldest thing that you could possibly come in contact with. But that's mainly a choice that I made since my fear of needles allowed me to refuse injections to the area being treated to numb me from the pain. I chose to take the pain head on, since I had years of training (hehehe).

That being said, this treatment is the only thing that has allowed me to keep a positive outlook on life. It's the only thing that has worked in 11 years! I currently have 7 keloids that have been treated out of the lot and although some of them have to be retreated because of how big they were the first time around, I stay optimistic because I know that both time and God have always been on my side no matter what anyone wants to think or say!

....to be continued

LATEST NEWS

    Notice of 501 (C)(3) Status:

    (February 1, 2017) Keloid Research Foundation has been determined by the US Internal Revenue Service (IRS) to be exempt from federal income tax under Internal Revenue Code (IRC) Section 501(C)(3). Donors can deduct contributions they make to KRF under IRC Section 170. Click here to view the 501(C)(3) Exemption Document.

    Journal of Keloid Research:

    (December 3, 2016)KRF is proud to announce establishment of Keloid Research, an open access scientific publication of the Keloid Research Foundation. Until now, keloid manuscripts have been published in a variety of journals. Our goal is to create a centralized publishing platform for all researchers who are passionate about this disorder, so that relevant clinical and laboratory research can be published in one place and under one umbrella. The journal is aiming to provide an international forum for the publication of original work, describing basic science, translational and clinical investigations in keloid disorder.

    Keloid Staging System:

    (August 19, 2016) In his most recent publication, "Neck Keloids: evaluation of risk factors and recommendation for keloid staging system" Dr. Tirgan has designed a staging system that allows for proper categorization and grouping of keloid patients into various stages.

    To assess each keloid patient properly, to better understand the natural history of this disorder, and to be able to compare future keloid study results among various patients groups, we clearly need a staging system that can allow us to describe the severity keloid disorder based on the size, location and/or extent of the keloidal lesions; as well as history of surgery or radiation therapy, and perhaps other factors that are currently unknown to us. Please click HERE to read more.

    International Keloid Symposium:

    (March 11, 2016) KRF is proudly announcing that the 1st ever will be held on September 8 - 9, 2016 at Rockefeller University in New York. KRF Extends its gratitude to Rockefeller University for hosting this meeting and its support for keloid research. Click on the image below to be directed to the symposium website.

  • March 11, 2016
  • Dr. Patricia Danielsen has joined the board of Directors of KRF:

    KRF is pleased to announce that Dr. Patricia Danielsen has joined the board of directors of KRF. Dr. Danielsen is a dermatologist at the Department of Dermatology and Copenhagen Wound Healing Center, Copenhagen University Hospital, Denmark. She has a PhD in wound healing and scar treatment science and a continuing academic career with a special focus on keloid scar disease. We welcome Dr. Danielsen and look forward to working with her in strengthening KRF.

  • November 1, 2015
  • KRF presentations at ETRS 2015 meeting:
  • Dr. Michael H. Tirgan was invited and gave two talks on Keloid Disorder at the Keloid Satellite Symposium during the 7th Joint Meeting of the European Tissue Repair Society & the Wound Healing Society that was held 21-23 October 2015 in Copenhagen, Denmark.

  • August 15, 2015
  • Atlas of Ear Keloids:
  • KRF is pleased to announce publication of it first sponsored book, Atlas of Ear Keloids. This full color atlas, authored by Dr. Michael Tirgan, provides an insight into natural history of ear keloids. With over 130 full color images of ear keloids, Dr. Tirgan provides a solid proof that surgery is not a treatment for keloid disorder.

    Atlas of Ear Keloids by Dr. Michael H. Tirgan

  • August 1, 2015
  • KRF presenting at ETRS 2015 meeting:
  • KRF was able to arrange for a scientific session dedicated to keloid research the 7th Joint Meeting of the European Tissue Repair Society & the Wound Healing Society that will be held 21-23 October 2015 in Copenhagen, Denmark. This will be the very first dedicated scientific session that KRF has been able to organize.

  • November 11, 2011
  • KRF Formally Registered in New York State
  • KRF is pleased to announce that its Certificate of Incorporation was accepted and filled by the State of New York. KRF is now able to conduct fund raising activities to support conduct of much needed research in the field of Keloid.
  • October 18, 2011
  • Grant Approval from Rockefeller University
  • KRF is pleased to announce that Dr. Tirgan's proposal to study "Pathogenesis of Keloid" was approved by the Rockefeller University Center for Clinical and Translational Sciences. (RUCCTS Grant # 2UL1RR024143 from the National Center for Research Resources, National Institutes of Health). We thank Rockefeller University for extending support to our fight against keloid disorder. www.KeloidTissueBank.com is the official website of the main study.
  • October 14, 2011
  • Dr. James N. Musyoka, joins KRF
  • KRF is pleased to announce that Dr. Musyoka has joined KRF. Dr. Musyoka has just completed his PhD with focus on would healing and keloid research and has previously conducted laboratory research in this area. We welcome Dr. Musyoka as a new member of KRF.
  • August 4, 2011
  • Dr. Djoned Sananto joins KRF
  • KRF is pleased to announce that Dr. Sananto, Head of Plastic Surgery Department at Haji General Hospital in Indonesia, has joined KRF. Dr. Sananto has strong interest in keloid disorder, actively treats patients with keloids, has previously conducted laboratory research in keloid and published the study results. We welcome Dr. Sananto as a new member of KRF.
  • July 28, 2011
  • Advanced Pathology Laboratory Partners with KRF
  • KRF is pleased to announce that the Director of Advanced Pathology Laboratory, Dr. Ali Daneshvar, has made a long term commitment to serve as the Tissue Bank arm of KRF. Advanced Pathology Laboratory is a CLIA certified full service pathology laboratory, located in Northfiled, New Jersey.
  • July 21, 2011
  • KRF Appoints General Counsel
  • KRF is pleased to announce appointment of its General Counsel. Attorney Ronald R. Benjamin of Binghamton, New York has been appointed General Counsel for Keloid Research Foundation. He will oversee all legal matters that concern operations of KRF. Mr. Benjamin has been practicing public interest law since 1979.
  • July 18, 2011
  • Certificate of Incorporation for KRF
  • The Certificate of Incorporation for KRF was completed by three initial board members, Michael Tirgan, MD acting as the Medical Officer, Nadereh Nouhi acting as the Business Manager and Alexander Duggan acting as the Patient Advocate and Liaison.