Nathan Wayne Carr was born in Germany, lived all around the US and now resides in Charlotte, NC. You will see from his story that despite his many moves and many doctors and hospitals over many years, he still could not receive a correct diagnosis until he was almost 40 years old. Nathan’s story follows in his own words.
Age 0 – 5: By this age my mother knew that there was something different about me. I just always remember talk of me going to the hospital for an office visit or into the hospital as an inpatient. Mostly I recall the discussion of the condition of my skin. My legs and arms looked as though I had been eaten by bugs and I was having a severe reaction with infected like sores, or problems with my respiratory system.
Age 5 – 11: By this age I also know that there was something different about me. I was unable to run and play like the other kids. In gym class I always struggled to keep up with the games that required running jumping, climbing a knotted rope or playing sports games like Basketball, Football and Wrestling. I remember once we were play football and I was tackled and the guy piled upon me. I could not gather my composure, breath properly and my skin itched and burned. I returned to the house, back into my room in bed looking out the window at the children playing. I was always teased for my weakness. I begin taking pain and nausea medication around the age of ten.
Age 12 – 18: Upon entering middle school, my life went from almost normal to being turned upside down. I was always sick, fatigued, with muscle weakness and soreness and felt as though I always pulled muscles, was vomiting, or in pain and in bed for long periods of time. I was constantly being taken to the doctor’s. I was told that I had allergies and also Sickle Cell Trait which was making me Ill. My first surgery was in the 7th grade. I was told my appendix busted and was sent to emergency surgery. After that, it seems I never fully recovered. Shortly after that, I was no longer allowed to take gym class or exert myself in any way. So while the other males were in gym, I was in Wood Shop, Sewing or Cooking classes. And boy did I get teased from the other fellows.
Also around this time the Military doctors had recommended that I seek medical attention from doctors off base as they no longer knew what to do for me. I recall going to the doctor every week until I was 16. We discussed my health which never changed along with the weekly lab work and many discussions that I should never have any children due to my unexplained illness. During the 10th and 11th grade, I missed so much time in school from my unexplained illness. It also became hard for me to attend and complete school, so during the 11th grade, I just stopped going. In 1978 I went to Howard University Sickle Cell Center. Tested and found Sickle Cell not to be the cause of my illness.
Age 19-32: Around this time, I begin to have a series of unexplainable attacks of leg pain with times of being unable to walk, tremors, seizures, vomiting, abdominal pain, severe body pain, muscle weakness, memory loss and diarrhea. During the next ten years I spent countless hours in the hospital and the following surgeries during 1979 – 1980 a doctor recommended that the first digit of both baby toes removed. He stated that that was the cause of my severe leg and foot pain. In 1985 I was taken to the emergency room screaming in pain that ran from my groin area through my abdomen. I was taken into surgery and when I awoke I was told that I had a blood clot in the right Testicles which had turned blue. The healing process was worse than the previous pain.
There were countless emergency room visits transported by ambulance of family. The doctors could only treat the symptoms so they started giving me fluids to restore my electrolytes and medication for pain and nausea. With these treatments sooner or later I would bounce back it went on from days to weeks at times. The emergency room doctors noticed that this form of treatment helped me recover so during my time of crisis they followed the same procedures. During my adult life there were times I could not keep my commitments never knowing when I could not get out of bed and I know there were a lot of people upset with me when I could not keep those commitments
Age30-40 – During this period of time I was getting harder and harder for me to walk at times. I was lucky to have the same doctor from the age of 21 Dr. John Schwartz, Providence Medical Clinic, Anchorage Alaska. Again I was in and out of the hospital. In 1990, I had another surgery for a Hiatal Hernia. I was told with all of the vomiting it caused my stomach lining to rip open and my stomach parts were coming through the hole. There were 150 internal and external stitches and some form of liner placed in my stomach. I was in the hospital 5 weeks in recovery along with blood clots in both my right leg and lungs. Later that year Dr. Schwartz referred me to now retired Dr. Marjorie Smith, Anchorage, Alaska. Out of the blue and after all of the testing I had taken in my life, she decided to test me for Porphyria. The test returned positive for Hereditary Coporporphyria (HCP). What a life saver she was. I remember the day I went in for the results. I was glad she found something, and I was no crazy. But, I also had no idea what she was taking about and it took me years to learn. I have learned to expect the unexpected. She also tried to talk me into retiring early.
40- Present: I struggled many years just trying to raise my children for several years by myself, keep a job in fear that I would be fired for missing too many days. Again at 40 the doctor tried to talk me into early retirement. I was lucky to have worked for the last two major companies UBS Financial Services Anchorage for close to 10 years and VectorVest, Cornelius, N.C. for 2 years I was employed at VectorVest and one year prior to my medical retirement I was no longer able to do everything that was in my job description. I could no longer travel or keep up with my studies. My memory was slipping badly. At times I could not remember my job from week to week. I had notes all over my desk. I could not handle any stress and we had continuous studying. I would read the material but not be able to retain it. By time I woke up struggled to get dressed and into office I would arrive and lay my head on my desk as I spoke with clients on the telephone. Many days I had to go home early, to a doctor’s appointment or hospitalized. I am thankful that they worked with me during this time and made it an easy transition to medical retirement. Many individuals would say you don’t look sick or you do not have Prophyria. I prayed that I never looked as though I was sick and sickness does not only show on the outside. But when I am sick I cannot hide it.
During the last year I have been charged by police cars, under cover cars and all while at the bank outside ATM with guns in my face, chased by a policeman on foot will driving down the street and him banging on my car with his hand, police cars taking a U-turn to follow my car and stopped by police when exiting a store with their hand on their gun. All because of my need to wear the protective gear year round to protect myself form the sunlight. If I have to go out to take care of business, I call the business before I arrive and I always go to the same stores down the street if I need food items during the day. I have contacted the local police department on several occasions and also the one in the neighboring city. Police have made the comment that I should stay in during the day or yelling at me in disbelief of my medical disorder. I carry the necessary paperwork and have a med alert bracelet. It has taken some time for me to get the cooperation of the police force. I finally told them ok I understand every ones fears but what about me. Several months ago after a policeman was chasing my car by foot I walking to the police department introduced myself and told them I am no longer going to stand this treatment. I only go out to doctor’s appointments, the hospital weekly or to take care of business that cannot be handled from home or via the internet. I told the attending officer that I feared that one day a police will use a taser gun, or I will get shot by a police just for being out of my home. The actions of the police have caused me to become a recluse in my home. I have had to make several calls to the North Carolina Disabilities Rights Office reporting what has happened to me, and in turn, they contacted the local police department and discussed my medical issue and also the cause of the officers causing me to go into crisis mode after I experience a run in with them. It has caused me to become ill and in bed for several days.
Seven family members have had the genetics test and 5 are positive. My mother, 2 sisters, 1 niece and I we all suffer from this illness in our own way. For the past 2 years I can no longer tolerate sunlight, UVA/UVB rays. Other family members are sensitive at times. It took a long time for my family to understand what I was going through because I did not have a name to my illness, Hereditary Coproporphyria HCP , and when I did , there was very little information about it. Fortunately, there is now much information about porphyria thanks to the APF .