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My name is Sherree and I have Parry Romberg Syndrome, most of you have never heard of the name. Parry Romberg Syndrome is a very rare syndrome only 500 people in the world have been diagnosed with it. Parry Rombergs is also called hemi facial atrophy. Parry Rombergs “is a pathological process involving progressive wasting of the skin, subcutaneous fat, muscle and occasionally, bones of face. It was first discovered by Parry in 1825 and by Romberg's in 1846. Eulenburg described the entity as ‘progressive facial hemi atrophy' in 1871. The onset is slow and progressive and begins usually during the first two decades of life, more often between the ages of 5 and 15. The progression of atrophy usually last from 2 to 10 years, following which the process seems to enter a stable or ‘burn out' phrase.”[1] There is no cure and no treatment for this disease, only a multitude of surgeries for different parts of the affected areas.
Me in 1980 I was 2 years old. I look perfect, with no Rombergs.
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When I was 8 years old, I was involved in a swimming accident. I got hit in the chin and jaw while I was taking swimming lessons. During the same week of my accident, I also got hit in the back. The accidents were minor, with no concern for medical treatment. It was 15 years later when I learned, that the accidents I had when I was 8 years old, caused my body to trigger a rare disease called Parry Romberg Syndrome.
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This is a school picture of me, it was taken in 1986, after we moved from Johnson's Bayou, LA back to South East Texas. You can see that I started up with the Rombergs Syndrome.
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My Life with Parry Romberg Syndrome
I was a very sick kid growing up. I had a lot of respiratory problems along with bronchial asthma. I also suffered from chronic tonsillitis, sinusitis and allergies as well. My grandfather worked in chemical refineries in South East Texas and we moved around a lot. At the time of my accident my family was living in Johnson's Bayou, Louisiana. My grandfather was a welder and had gotten a job with a chemical refinery called Carbon Black. During our short stay in Louisiana I would go every week to the local recreational park to take swimming lessons. My family did not know that our short stay in Johnson's Bayou would change my life forever.
The day the accident happened is still fresh in my mind. It started out to be a day like any other day with a trip to the local park. I took swimming lessons once a week and this was my 3rd week to go. During the swimming lessons, the instructors would let us go off and practice what we had just learned. I had just learned how to dive off the diving board, so at that time I went off to practice my new diving skills. After my 2nd big brave leap off the diving board, a grown man jumped in right after me. He was not paying attention to what he was doing and he accidentally hit me in the face with the heel of his foot. I gasped for air and cried as I tried to make it up the 25 ft. deep pool to catch my breath. When I finally reached the surface of the water my grandmother was waiting for me. She immediately noticed that there was something wrong with me. She asked me what the problem was and I told her nothing. She then asked me if I was hit in the face. I still told her nothing, and forced a smile on my face. When I was finished with my swimming lessons, I got out of the pool to dry off. My grandmother asked me, yet again, and held my face in her hands. “Why is your jaw blue?” she asked. I said, “I do not know why!” That was all that was said and we left to go home. When we got home, I went to the bathroom to change. As I was changing, I looked in the mirror at myself. I saw immediate changes to my face. First change was the left side of my face turned bluish in color, like a big bruise. I also experienced what I called a major migraine. During that time I had gotten very sick, threw up and was very sensitive to light. I was in so much pain that I was crying for my grandmother's help. All I could think about is that I wanted to go lay down. I could not walk nor could I see. My eyes where sealed shut from the pain in my head, and the light was hurting my eyes. I wanted to lie down in her room because it was a dark room. The room's window was covered with aluminum foil to block off heat and light. She helped me in her room and put me on the bed. She asked me what was wrong with me as she went to turn on the light. I cried in horror, begging her to please turn off the light. My family thought to bring me to the doctor but as the day went on I got better. The blue never went away. Though my family thought it was odd that my face was blue in color I never went to see a doctor for it.
I saw my old family doctor a year later to give me medication and treat me for tonsillitis. (During that year I finally told my grandmother about what had happened to my face since the blue spot never went away, and there was more noticeable changes that where occurring with my face and now neck). At the doctor's visit, my grandmother asked him to look at my jaw, chin and neck on the left side of my face where the accident happened. We never showed him my back. My face was still blue in color but during the past year, I had also gotten brown and white patches over my neck. My back had brown and white patches on it too, but it was not that noticeable at this period in time. We were told by my family doctor that these white patches on my neck where caused from the little pin hole that I had in my ear drum and the fluid that drained from it caused my skin on my neck to change in color. He also told us that it looked like I was losing circulation in my jaw and chin, and that was the reason why it was blue in color. He was not for sure if all of this was related to the accident, and he never tested me to see why this was happening to my face and neck.
Unlike others, I went through life not knowing I had Rombergs. All I knew was that something was wrong with my face, neck and back. I got braces at age 13, which is when I got my first x-ray of my mouth. The orthodontist referred me to see a maxi-facial doctor to see if I needed any type of surgery, to help straighten my teeth, and correct my jaw and chin. My chin was now sunken in at this time. The doctor wanted to do surgery but did not diagnose me with Rombergs. He also stated that the braces could help without surgery. So I got braces in hopes that everything would correct itself.
This is a Glamour Shots picture. It was taken when I was 15. I hated this picture.
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As a teen, you go through lots of changes. I got picked on a lot by my peers. I grew to have a low self esteem and found myself in the privacy of my room staring in the mirror wondering why my lips where smaller on one side, why kids would call me crooked chicken lips, why I had a small indention in my chin that looked like it did not belong there. My jaw looked liked I had play-dough jaw as if someone had pushed my jaw inward with their hand. The blue color on my face was still there, so was the brown and white patches on my neck and back.
I grew to have learning difficulties in school. It was very hard for me to stay focused on things when all I could focus on was what I looked like. I did make quite a lot of friends, some I still have today. Even though I had a self esteem problems, I managed to still have a normal life. I learned that make-up was the new miracle drug. I gained confidence and grew to be a little more sociable when it came to boys. Not that many people could tell I had something going on with my face anymore. As for public mirrors, I dodged! I knew there was something wrong with my face; the whole sharing a mirror thing made me cringe at the thought of someone seeing me in a double reflection of myself through the mirror. I called it the evil double mirror reflection, like snow white with the evil witch. Every time someone else would see me in a double reflection they would look at the mirror and then look at me like they saw something very weird. I learned over time that the double mirror enhanced the whole disfigurement.
My Wedding Day, Sept. 1, 1995.
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When I was 17, I got my braces removed and as far as the changes in my face, well, it seemed like it stopped. I got married at 17 to a wonderful man and finished high school. It was when I was 17, I experienced my major migraine again. I was sitting in the living room talking to my husband and all of a sudden I stopped talking and felt a horrible pain radiate in the right upper front part of my head. Then the pain sent electrical like pulses through my temple, it would eventually spread everywhere in my head. It all happened so fast I had no time to react, it was as if I was spaced out, I was frozen in pain. My husband was confused and thought I was ignoring him and he raised his voice at me to try and get me to respond. I looked at him and started crying. Then I grabbed my head and went into a fetal position. I then started beating on my head with my fists to relieve the pressure. My husband reacted by pulling me up from the couch and walked me to my grandparent's house. My grandparents lived a couple of houses down, and the walk was not far. For 24 hours, I was in pain. I took one of my grandfather's pain killers to help relieve the pain. I also had to put cotten in my ears to drown out noise. I also had a sheet wrapped around my head to cover my eyes from the light. My family was really concerned for me and they were worried about the changes that I was experiencing with my face. But still, I never went to a doctor to have it all checked out.
A few months later before my high school graduation, my nose had turned to the left just slightly. I started to have more visual problems. I now was not confident to drive at night because everything was blurry and would blend together. I went to the eye doctor and he said nothing had changed with my vision but told me that I had night blindness and I had a slight dimensional problem. I also underwent a tonsillectomy to finally remove my tonsils that kept me sick all of those years. I did have a few doctors comment on my face before surgery, but they never requested to look at it fully.
Graduation Day, May 1996.
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I was 20 when I had my first child. My pregnancy was good until the day my water broke. During my stay in the hospital, I ended up getting an allergic reaction to a medication that was not mine. The nurse made a big mistake and gave me someone else's meds. I went into allergic shock and the nurses had to have ER come and help. I immediately had to have medications pumped into me to save my life along with my baby's life. My blood pressure shot through the roof and I got another major migraine, besides that, they induced me to go into labor. After 8 long hours of my body doing nothing but being in shock they scheduled an emergency c-section. My daughter now has problems related to her birth. After she was born my nose turned even more, I now had a big split on the tip of my nose. My lips shrunk some more, my face just looked worse and this time it was really noticeable with or with out make-up. Before loved ones did not notice as much, but now they did.
1999, Makayla age 1 1/2 (daughter) and I, age 21, at my grandparent's farm.
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In the summer of 2001, my husband had lost his job for the last time. He was unemployed for three months and we where struggling to make ends meet. One night we decided that something needed to be done. We had looked hard for months trying to find a job but there where none. My husband had always talked about joining the Marine Corps. It was a dream of his since he was a young boy. His brother was a Marine and had served in Dessert Storm. My husband always wanted to be a Marine, but he never would follow through with his plans to become one. So we talked about the Marine Corps and how it would have been if he had joined right after we had gotten married. Finally, after some serious thought, we went to see a recruiter to talk about my husband joining the Corps. In July of 2001, my husband was sworn into the Marine Corps and later left for boot camp in August of 2001.
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Jan. 2001, I was 22 and Makayla was 2 years old. This picture was taken one month before our birthday in Feb.
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During the months prior to my husband joining the Marine Corps, we collected food stamps and Medicaid to help make ends meet. While he was away in boot camp, our daughter had gotten sick and I took her to my old family doctor. As I got her treated I was going down memory lane with the doctor, on when I was small. I happened to talk to him about my face during the office visit. After examining my daughter he examined my face too. After an examination of my face he then asked “Why don't we get a head x-ray done?” I said yes, please, I need to know what is going on with my face. So he walked me into a room where there was an x-ray machine for me to get an x-ray done of my head. While I was waiting for the results, I chased my daughter from the hall back in the room when I saw the doctor call another doctor in. Looking at the x-ray I saw a skull that looked like it had been cut in half and someone tried to put the wrong piece back on, on the left side. The doctor then saw that I was standing in the room and came and put his arm around me and told me that I needed to see a team of specialist right away. At that point I was scared, confused and I wanted answers. The doctor gave me a list of doctors in the Houston area along with a referral.
That month I called a plastic reconstructive surgery clinic for help. During the call I told them about my face and that I had a doctor's referral to see them, they then set me up with an appointment to see the team of surgeons. It was a long 2 month wait before I took my trip to Houston, Texas. At my appointment I had a cat scan done before the plastics team saw me. I also went through a series of questions as the team of doctors one by one came to poke and prod at my face. I had brought my mother-in-law with me to the office visit for comfort during the visit. She was also there to help me ask the doctor important questions. When the doctors were through with me, they left me alone in my room while they reviewed everything. My mother-in-law and I sat there with anticipation on the diagnosis. Finally one of the doctors came back in with the plastic surgeon to tell me that I had Parry Romberg Syndrome. They told me that the (cleft team) team of doctors wanted to do the whole nine yards on me. They then went on to tell me to prepare for three years or more of major facial reconstructive surgery. All of this was a shock to me and I did not understand the doctor when he told me that I had PRS. My mother-in-law and I looked at each other with confusion and asked, what is Parry Romberg Syndrome? The two doctors looked at us confused too and they acted as if I already knew, but I did not know nor did my mother-in-law. They then told us about what Rombergs was and how rare it was. I agreed with them about the surgeries but it never crossed my mind on how hard it would be to do it.
My husband Pvt. Ron
USMC Christmas 2001.
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After my husband finished boot camp he had earned the title Marine. I then got Tricare Insurance which is for military personnel and their dependents. I ran into a problem with the insurance company not letting me see whichever doctor I wanted, not every doctor was covered by Tricare. I fought and fought with the insurance company to see the cleft team. Tricare would not let me because I was out of the region and was not yet at my husband's new duty station. Everything went to a stand still from there until my husband got orders for us to move.
We then moved to Yuma, Arizona in 2002, and again tried to see doctors out of town for my face. Finally I did get a referral to see a new cleft team of doctors and again was at a stand still. Some of the doctors I needed to see were maxi-facial and orthodontist. Tricare and United Concordia would not cover this because they said, “no matter what it was for it was for cosmetic reasons.” So then I raised hell at the station's Tricare office and told them it was not for cosmetic reasons and that I did have a medical problem. They told me that I would have to have written documents from the other doctors that I saw stating that I had this rare syndrome. The doctors had to explain this in a letter to Tricare so they could submit it for review. After all of the run around, Tricare finally told me that I could get help but I would have to drive to San Diego's Navel Medical Center for it and it was three hours away. They also suggested that I go to a building on base to apply for help with the Exceptional Family Member program so I could get recognized through the Military of having a rare disease. So I did. I got put into the Program and since my disease was very rare I got put into a category four, meaning most severe. This also helped with my husband's command, it let the command and the Marine Corps know that I had a disease and that I needed the best of medical treatment and sometimes I would need my husband's help with driving back and forth to Balboa, also known as the Navel Medical Center in San Diego.
I went to my doctor on base and got a referral to Balboa. My first visit was great, my doctor, Captain/Doctor Amy Wandel, head of plastic surgery, knew about my syndrome and was prepared to do whatever surgery option I wanted. She also told me that everything would be covered and not to worry. Tricare would cover it as long as I was going to Balboa for treatment. So we disused different procedures and at that time I had done my research on Rombergs and got involved with the Romberg's Connection online and I also participated in Dr. Stone's survey online. I chose to do the free flap. My Rombergs is a mild to moderate case, so total reconstruction was not the path that I chose. I wanted less surgery so that I could tend to my daughter who also has medical problems of her own and needed constant care.
Sept. 2003, Labor Day weekend.
This picture was taken 3 months
after the free flap operation.
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I had my first free flap surgery in June of 2003. The surgery was supposed to be an eight hour operation but it lasted for fourteen hours. During the operation my doctor took fat tissue from my back. The tissue had to have blood vessels still attached to it to help give me a good supply of blood to my face. This would also help keep my flap alive. During the surgery I had lost a lot of blood and I had to have a blood transfusion. After surgery I was put into ICU. I had a breathing tube down my throat. They did this so my throat would not close up from the swelling. When I tried to wake up after they placed me in my room, I also almost went into cardiac arrest. The long hours of operation had thrown me into sock. I had also gotten frightened when they were trying to touch my feet and legs and I could not feel them. The long hours of operation had made my legs go numb, and I was scared to death from it. I thought I was paralyzed from waist down. I fought the nurses for my husband. They immediately called my husband to my side, my blood pressure was rising up from stress and they needed me to calm down. My husband had come back home from Iraq and was there for support with the request of my doctor through a RED CROSS message two weeks prior to my surgery. If it would not have been for my husband being there, I would have gone insane. My husband stuck by my side day and night. He called family members every four hours to let them know how I was doing. He held my hand when I was in pain. He wiped away my tears when I cried. I spent one week in the hospital, it was the hardest. The flap went well, too well, there was no absorption, my face was huge. The doctor put a lot of fat tissue in so that I would have enough. My healing process took about three months.
After a total of four months, I underwent another operation, a touch up operation. This time it was to remove some of the excess fat from my face and lift up the skin that the flap had stretched out. I also had fat put into my lips to help in fill my lips out. Since the flap operation, I had lost all the fat that was built into my left lips.
Oct. 2004, Halloween night. This was taken after I had 2 operations.
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I had another operation in November of 2004. This operation was the same as the last one. Just more touch ups. After my last operation I wanted to write a story to tell about my personal life story having Parry Rombergs. I wanted so much to help in spreading the word about Rombergs through the Military community. I got in touch with the Dessert Warrior. They do all of the public affairs articles here on base. So that is when I started on my long story that I am writing today. I did present this story to the Dessert Warrior and they loved the story but they where not able to put all of this in the paper. If they would have added all of this to the paper I would have had the whole news paper to myself. I was happy to get my story out, and I hoped I touched a few people's lives along the way.
Feb. 2005, Saying goodbye to hubby as he leaves for Iraq.
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My article came out three months after my husband left to go back with his unit to Iraq. Yes, my husband is deployed for the second time, and this month I got word of my next operation which is scheduled for August 3rd. Though my surgeries are now minor, my husband will not be able to come back for this one. My husband's command will let him call me from Iraq the day of my operation and our daughter will be taken care of by a few good friends that I have here on base. My family and my husband's family will not be able to fly down for my operation. They do not have the money to fly since they live all the way in Texas. So, I will go through this operation alone. I am not afraid because I know I am not alone fully. My loved ones and my husband will be with me in spirit. All I can think about is my husband is out there in Iraq. My husband is very happy to be serving his country, and take on his duties as a Marine. I know he wants to be here for me but he has a job to do. I fully understand that, and I am so proud to be his wife. He sacrifices his life every day for all of our freedoms along with the many other service members who serve along side him. His strength through this has given me strength to go through with my surgery without him. I am also glad that I get to have my last surgery done while he is gone. When he comes back home he will be seeing the new me for the first time, our ten year wedding anniversary is also coming up in September so this will be a great surprise to give him.
Easter 2005, taken one month before my Romberg story came out in the paper.
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It has been a long two years. I am finally seeing the results of my surgeries. I look good and I feel good. This has been a long journey and I am so happy to have done it. With the help of so many supporters, my friends and family, I don't think that I could have ever been able to go through with it. Also, my daughter has a lot of medical problems and she keeps me on my toes. Juggling her medical, my medical, and my husband's deployment has been very tough, but the support I get, helps to carry me through every day. Also, I do not want to forget about my wonderful doctor who has done a fabulous job on me. I want to say thank you to the Marine Crops. The Marine Corps saved me and my family's life, you know. I would not have been able to have these surgeries done if it would not have been for them letting my husband join the Corps. Last, I want to say thank you to my husband, I love you and miss you so much Ron! He has given me strength and he is my rock through it all. Words could not express how deep my love is for him. I want to say thank you to him for all the times he stood by my side while I underwent all of these surgeries. To Ron: I can't wait to see you again my love! I hope you have a good deployment, stay safe, me and your daughter love you and miss you so very much.
Before I close I would like to say thank you to all of you who read this, because that means my stories is being read, and the words Parry Rombergs are getting across to everyone. I hope this story helps each and every one of you. Take care, be positive and God Bless!
2005 Surgery
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Pre Operation Picture.
Prepping me for surgery. |
Post Operation Check up at
Balboa Hospital.
Me, Makayla and Dr./Captain
Wandel, Head of Plastic's.
(November 2005) |
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