I met a 19 year old girl who is recovering from Juvenile Rheumatoid Arthritis, which she was diagnosed with at the age of 11 years when she was wheel chair bound, crippled with pain. A drug from a Pharmaceutical company, took her out of the wheel chair and made her feel well enough to participate in school academics. She even participitated in a bit part in a movie filmed locally. Then, the drug that made her walk again gave her a severe side reaction of breast cancer. Part of her breast had to be removed to save her. She recovered in time to graduate from high school and to apply and be accepted in a major, east coast college in USA. She decided she had enjoyed acting in that bit movie and so that should be her career choice.
Child in wheelchair from JRA
Nobody had prepared the college Professors for a student who had recovered both from Juvenile Rheumatoid Arthritis and from resultant breast cancer. Apparently, several students in her local school had Juvenile Rheumatoid Arthritis, Autism, Leukemia and the school was well-equipped to service the unusual demand for wheelchairs and special communication disabilities.
However, not so in the college. The Professors were ill-prepared for her frequent need to take breaks to take doctor visits. In fact, one night when she was writhing in pain, her roommate had to take her to the hospital in the city and out of kindness the roommate stayed there all night and all of next day to give her company. When the Professors asked her why she had missed her classes, they did not believe the roommate and reprimanded her by lowering her grades, discouraging her from ever helping a friend in need. Apparently, colleges Professors are not supposed to teach you about helping a friend in need. Also, the Professors had never known that an autoimmune disease may require frequent doctor visits. They had no intention of giving any slack to the patient either. She had to transfer from that department to another which agreed to work with her requirement for flexibility. Apparently, acting classes could not be flexible and so she was given credit for only a single class that semester and not all of her classes. She had completed attendance almost until the end of the semester when she had become ill. She was very saddened by the lack of comprehension of the learned Professors that they were in a society where autoimmune diseases was on the rise.
She informed me that her mother’s brother had multiple sclerosis. Her little sister, only 11 had recently been diagnosed with Juvenile Rheumatoid Arthritis and that her 17 year old brother had recently begun to complain about very painful knees and that her healthy mother looked sickly. Another 8 year old brother was not complaining of anything. Would college be ready for the members of her family and the large number of her school mates arriving with various stages of different autoimmune diseases? This would probably be the first generation arriving in college with large numbers of advanced autoimmune diseases. Should the college communities begin to prepare? Should Professors begin to make special concessions instead of punitive grade damages to students who have to make frequent health absences? What kind of symptoms should Professors be expected to be aware of? Most Professors are from the generation when autoimmune diseases were practically not observed among the young. This is a new epidemic.
Personal blogs of College students with Juvenile Rheumatoid Arthritis
1) “My Rheumatoid Arthritis Journey” by Jill Tague; diagnosed at 13 months
2) “Rheumatoid Arthritis Warrior” – lists personal stories from several patients – Read Dana’s story beginning at age of 19 years.
3) “Margo’s inspiring story” – A video of another persistent JRA patient which inspired the blogger
Peer-reviewed Publication of families with Autoimmune Diseases: Have you ever wondered why some families have both an autistic child and a parent with multiple sclerosis? The answer to your question may be from research by Doctors from the Departments of Psychiatry and Pediatrics in Indiana, who published their observation in the journal Pediatrics in 2003 which you can read here. They found that there is an increased frequency of an immune disorder in some family members of autism disorder children. There may not necessarily be another family member with autism but with a variety of other autoimmune diseases. Such families show increased frequency of autoimmune genes, especially inflammatory processes and cell-mediated immunity. Mothers of autistic children especially have a higher frequency of an autoimmune disease. Naturally, research is being pursued in the role of immunological processes in the development of autistic disorders. Rheumatic fever and Rheumatoid arthritis was frequently found in the family members.
College Dorm Food: There is a second problem. Most children with autoimmune diseases are unable to eat several kinds of food. Have you noticed how the number of gluten allegic people around you recently has increased? Many of them are now in college dormitaries. Yet, colleges have not adapted. Their dorms still serve food not catering to the large number of children with autoimmune diseases. These children have to cook for themselves sometimes in campus miles away from decent grocery stores within walking distance from dormitaries. Also, there are no kitchens. Colleges are in denial that their student population may be allergic or have digestive issues rising at an alarming pace. Who is going to raise this issue? Parents are required to encourage their children to be independent and go away to college. That is what media has encouraged with subtle messages. Children may no longer confidentally go to their local college and continue to live at home, like their parents when they went to college. Now, the kids must cross states and pay phenomenal college fees.
College Jobs: The college fees means the children often have to work to ofset costs. How does a child coping with the stress of autoimmune disease deal with studies, cooking and a job? Get frequently ill and then finally collapse. Who is looking out for our kids with autoimmune diseases in college? Are Professors going to actively arrange for these kids to get suitable jobs for these kids so that they do not have to get jobs that will be beyound what their chronic fatigue may be able to handle? Some colleges have fees close to $60,000 annually.
Eating Groups: The kids are meeting to discuss food lifestyles. Meet up eating groups are forming to discuss safe food groups such as this one for ‘Eating for the A’s: Autism, Atopic, ADHD, Asthma…‘ for dietary and lifestyle factors for healing childhood diseases. It has well-attended gatherings with speakers like Author, Karen Ranzi, who is on a mission to teach all who care for how to eat for the A’s, a person named Lisa who led a workshop on sprouting healthy food on your window sill. It was established in 2008 to face the observation how weak and young people are these days when compared to their grandparents.
There are some physical health issues that go with A’s and only one of them may be chronic fatigue. Just because these A kids look good does not mean all is good in the inside.
What can you do? In the memory of all the kids who have suffered from the A’s, become a founder of such eating groups and alert your school, college and community to a growing epidemic of otherwise wonderful children with A’s who simply cannot eat the food that our grandparents and their grandparents ate. They have a real issue that appears to be common – an inability to tolerate various food groups. Why? Perhaps, you can encourage more people in your community to begin to ask this question. Chances are at some point it will touch someone in your cirlce. How can we as a society stop this recent increase in A’s in the society we have created?
1) High and Low levels of iron linked to breast cancer prognosis
2) Heavy Periods as a side reaction to Juvenile Arthritis treatment
3) Mutations in our genes linked to heavy iron load?
4) Review of Juvenile Rheumatoid Arthritis by Cincinnati Children’s Hospital Medical Center
5) “Children aged 4-21 afflicted with JRA are elligible for a wish grant”
6) “Joint pains after vaccination” by John Haines, health educator.