3 - Adventures In Kindergarten (Reuploaded)
Stress makes any of the 7 porphyrias worse. Erythropoietic protoporphyria is no different. The more stressed out a person gets, the worse their reactions are, the longer it takes them to heal, feel better, etc. Remember that as you read ahead.
Going to kindergarten for the first time should be an fun filled exciting adventure! You learn new things, play with new toys, and meet all these new exciting characters that represent letters! Remember those days? Ah, the memories. Now imagine being this little girl who can't be in the sun, arriving at her new school, meeting other kids her age, and going to her new classroom.
Porcelain met her new kindergarten teacher. We'll call her... Mrs. Red. At first glance, she appeared to be an amazing teacher. Porcelain really liked her. Soon however, the rose-colored image she had of her teacher began to fade. She quickly learned that Mrs. Red did not like it when Porcelain said she couldn't see the blackboard and that she was getting headaches. The reason Porcelain couldn't see the blackboard from her seat was because the classroom lights were so bright. Her eyes had become that yellow-green shade, but she was still just as sensitive to lights as before. The teacher made her sit by her desk, where the troubled kids sat. No fair! This made her feel like she was being punished for her ailments.
The teacher recommended to the school that Porcelain be required to have glasses so she could see the blackboard. Her mom worried that it might be the lights, but the school didn't care or understand. She took Porcelain to the eye doctor anyway, just in case it was her vision. Yet again, she couldn't focus well in the bright lights of the doctor's office, so she failed her eye exam. The eye doctor prescribed bifocal lenses to Porcelain's horror! It took forever for her to get used to them! She returned to school with the new glasses, but though she was placed in the front row, she still had trouble focusing. The glasses and the lights now both gave her headaches.
Her troubles just became worse from there. She began to dread recess even though it was supposed to be fun! The school had been informed she was sun sensitive. Mrs. Red knew if Porcelain complained of itchiness, looked pinkish, or felt sick - that she was supposed to make sure she went indoors, cooled down, hydrated and sat recess out. That never happened. None of that ever happened. Yep, you heard me right. Every time Porcelain wasn't playing where Mrs. Red thought she should be, she'd make her go play with the other kids because she wasn't being 'social enough'. The other kids were in the sun. Porcelain knew she wasn't allowed in the sun and had to stay in the shade. Sometimes she felt like crying.
Nevertheless, Porcelain would go home shortly after being forced to play in the sun and not return to school because of illness for at least 3-5 days. She missed a lot of class and things she should have been learning. The school would berate Porcelain's mother, her mother would berate the school about Mrs. Red, and there would be an angry medical doctor caught in the middle. The doctor just tried to keep this little girl healthy but the rules kept getting ignored, and Porcelain kept getting sick.
What happens when Porcelain is in the sun? How does her body react? If you are squeamish, this is your only warning.
Within minutes of being trapped outside in the sun with no cover, she begins to itch. Hives and a rash begin to form all over, more prominently where the sun touches her skin. Her face starts blistering within ten minutes of exposure. Within a half hour or less, the sinuses begin to react, nausea will set in regardless of going indoors. Her head will also begin to pound. If still in the sun much longer, she will pass out. It's like having heat exhaustion, because not being able to sweat before feeling like your body is on fire from the inside. Sounds gruesome hmm? Imagine this happening to a five year old. Recess is 15 to 20 minutes. Porcelain was having a phototoxic reaction to the sun.
Can't imagine why Porcelain hated her teacher.
Because of Porcelain's lowered immune system, she was not able to receive any new vaccines. The whooping cough was spreading like wildfire through schools at the time. Luckily, everyone at her school had the vaccine... except one kid who came to school coughing up a lung. Unluckily, he was in her class. As you would imagine, Porcelain caught the whooping cough pretty quickly. She ended up in the hospital for a week.
Porcelain missed about 35 days of kindergarten in all. The only reason the school didn't have the welfare department involved was because her mother kept well-documented paperwork, doctors notes stating exactly what was wrong, and a lawyer ready to strike the school down with his mighty book of law. Mrs. Red was never reprimanded or fired for putting Porcelain through all this pain and torture.
Summer came and kindergarten was over, but not for Porcelain. She was required to go to summer school to be passed on to first grade. To Porcelain's delight, the teacher was not Mrs Red! Oh joy! Oh happiness was hers! The new teacher quickly decided that Porcelain just needed the lights dimmed in the classroom in order to see, and listened to the mother's rules about the sun. Porcelain's health finally returned to normal, well normal for her, and was able to receive all her vaccines.
This is why most parents of children with any of the 7 porphyrias tend to homeschool. Porcelain's mother didn't have a choice and had to send her child to public school. It can be an uphill fight in some areas of the world.
And that is where I will leave the story for now, on a serious note. Till next time.
Here's a link explaining why phototoxic reactions happen:
Link explaining different types of photosensitivity:
Fair warning. Medical pictures ahead:
|Hives that begin to form. (my own picture)|
|Rash, redness, and blisters (content from ADC website)|