My life took a large turn six months ago. I am still trying to sort through the pieces of a puzzle I never knew I was supposed to keep the pieces to. To put it plainly and simply, I am swimming in a deep sea of confusion and real frustration.
In September of 2001, I suffered from a horrible sunburn. Like any other sunburn, the pain and the peeling went away and my life went back to normal.
In April of 2002, I was lying in bed one night and I noticed that there was a part of my arm where it felt like something hard was underneath my skin. I thought it was odd, yet forgot about it until a week later, when the spot turned a blotchy white. The spot covered roughly a square inch on my outer bicep. Figuring it was just from sun or a rash, I put some antibiotic cream on it and ignored it. A month went by with no change and I became concerned because the white patch now looked like shiny scar tissue and it was as thick as leather. It was now beginning to itch as well. Everyone who looked at it was baffled and I thought that was never a good sign, so I made an appointment with my doctor.
Living in a small town, my doctor had never seen anything like this, and prescribed some cortisone cream assuming it was a fungus and it would disappear in a week. When it remained unchanged they decided to take a skin biopsy that left me with a large purple circle on my arm, and they determined it was Morphea Scleroderma . I had never heard of either of these two words so immediately I searched the Internet and bookstores and much to my dismay I learned that it is a very rare skin disease that no one really knows much about.
I had my first appointment with a dermatologist today. He prescribed a new cream which seems to have helped decrease the size by thirty percent for his one other patient who's been struggling with this for five years. Apparently my insurance company does not find it important enough to cover medication for this unimportant disease for a few rare freaks, or at least that's how I felt when they denied coverage.
I had been looking forward to this appointment, expecting I could ask all my questions and receive a few answers. I was terrified to discover that I knew more about this disease than the dermatologist did. What I learned is there are no known causes, cures or answers about whether it will spread, turn into systemic scleroderma, be inherited by the children I plan to have, and whether I should stay away from the sun, etc.
I am engaged to be married next fall and now I am not sure if I should still look forward to children and a normal life or if I am going to turn into a freak with patches all over my body before I get to take my wedding photos.
It has been six months since the first spot showed up and now it has grown to three distinct blotches in one spot and I am developing another on the back of my shoulder and one on my forearm both on the same side as the original spot. Help!
Once I got home I found this web site and began to read stories from other people with this disease. As sad as I am to hear these other horrible stories it gives me some sort of hope that someday we may actually be able to put two and two together and find out some answers. I do not take the runaround easily, especially when it is about my body.
Several things that I have noticed as a common factor amongst stories are that many people with Morphea seem to have had large exposure to the sun before it first occurred. It seems no one has received the same treatments or answers from their doctors, and everyone seems to feel the same as I do.
I think there is a new emotion that develops when learning to deal with this disease. I am full of anger and frustration right now. Will someone please just give me some sort of answer I can grasp onto? I do not know what to believe, where to turn, what to try next, what to tell people who care about me when they ask me questions.
I have noticed that sun exposure agitates the spots so I am learning to become nocturnal. I have also noticed that it only itches when the spots are very dry such as right after a shower, or after being in the sun, so I have been keeping lotion on it which helps with the itching. My spots are a pale white with darker rings on the outside of them. The skin is extremely shiny, tough, slick and scaly.
I wish with all my heart that every one of us will be writing in with our successful victory stories very soon. My heart goes out to each and every one of you suffering with the same disease and please feel free to contact me with stories, questions and advice. We need to work together to fight this ugly battle!
Michelle, in my experience, your concerns are very common in people newly diagnosed with Morphea Scleroderma, and I am glad you raised them!
As I understand it,Morphea is a form of localized scleroderma, which affects only the skin, and never the internal organs. Fortunately, it will not reduce your life expectancy. However that does not make it any less of a concern, for as you know it takes fortitude to deal with an unusual illness, especially one which can affect your looks and self-image.
There are some treatments for Morphea now, however many cases are mild and self-limiting, often fading within five years, even without any treatment at all. The cause of Morphea is largely unknown, although it is frequently associated with previous injury; and it seems to me you are correct in your observation that many Morphea stories on this site refer to sunburn as a suspected trigger of their illness.
It has been almost two years now since my original diagnosis, so I am approaching the end of the time period where most cases disappear if they are going to disappear. I have been through the entire emotional roller coaster and I am feeling much more at peace with my disease. In fact, I try not to even look at it as a disease anymore.
I have found that the best way to deal with it is to keep living my life and not looking back. Since my diagnosis I have had several big events in my life. Most importantly, I was married in September 2003, to my best friend who supports me through all the uncertainty. That has provided me with much happiness and a sense of balance in my life.
Also during this time I started to experience new ailments and I am still not certain if they pertain to this disease or from just plain stress. I started to feel a strange sensation in my esophagus, almost as if something were stuck inside. This sensation came and went, but sometimes it would stay for a few weeks at a time and then it would be gone. I underwent several tests which were not the least bit pleasant only to find out nothing.
A week later my heart began palpitating and causing me spurts of adrenaline and a dizzy sensation randomly throughout the day. I gave the symptoms one week in case it was the flu or a reaction to the barium they had me drink for a test the week prior. When it persisted I returned to the doctor. Once again they wanted to run more tests on me. I was reluctant, however, as I felt my life was at stake and fear took over, but I finally agreed. They hooked me up to a twenty-four hour heart monitor. This found nothing wrong because the symptoms strangely disappeared that same day. The symptoms did not show up again until almost exactly one year later when the exact same thing happened for one week and vanished. I was far less nervous the second time as I had already experienced the whole thing.
Currently I am experiencing nothing and I have written the esophagus problem off to heartburn. I am tired of being a guinea pig used by the doctors for speculation as a pawn to get insurance money for test after test. I am much happier when I stay away from the doctors and try to forget about the entire thing as much as possible. I try not to let it get me down.
During the winter it is far easier to deal with my morphea because it remains hidden. I somewhat dread the sunshine, but I have learned to deal with it as best as I can. The spots have taken up my entire right arm, shoulder and are spreading across my back now. They do not show any signs of stopping, so I try not to get my hopes up anymore like I used to. It only leads to a greater let down each time it stays.
My biggest fear is one that I do not have much information on. My husband and I are dying to start a family. I am just afraid I either will not be able to have children, or if I am able, that they may end up with this same terrible disease. I would feel a huge amount of guilt if another person had to suffer with this disease because of me.
If anyone has any information you want to share with me, or if you just need a friend to talk to about this who understands your frustration, fear, etc., I am here. Please feel free to email me at anytime. I love to hear from my friends at ISN.
New email address needed 11-03-06 SLE
Old Email Prefix: jenibean405
Story edited 10-17-02.
Story posted 10-21-02.
Webmaster's note by Shelley Ensz posted on 10-21-02.
Email notes updated 1-29-04 SLE
Story update 02-04-04.
Story update posted 02-14-04 SS
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Causes of Scleroderma
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.