I am 24 years old and since I was a little child I have been cursed with one of the worst cases of JRA (Juvenile Rheumatoid Arthritis) ever. Now, with brittle bones and constricted muscles I have very little choices in what meds I have to take just to stay out of the red zone. After growing up on hundreds of pharmaceuticals my digestive system is shot. I have had several procedures to help with the gi problems but the only thing that I have had any luck with at all is simply quitting the pharmaceuticals all together. After being on a feeding tube for a very long time I wanted nothing to do with meds. My mother never wanted me to take the pharmaceuticals but she had no choice. The doctors said that if she stopped giving me the meds that they would turn her into children services. When I turned 18 I had the power to turn down the meds myself. I then turned to Marijuana for my pain management. Aside from pain management, I have practically no appetite. Probably from the damage done on the inside. Pot makes me hungry. It takes my pain and inflammation down to practically nothing. Some people don’t believe me when I say that but it is a fact in my life. I live in Ohio and I have heard that I could some how get marijuana for my situation. Is this true? Can I get the one drug that helps me more than it hurts me? I hate the ropes I have to go through just to eat more and live a little. Any advice? Any knowledge?
Juvenile Arthritis Archives
i’ve had it for 3 years now and i know i’m young for arthritis but it runs in my family. any good ideas for me to deal with the pain???????????
I am 27 years old and it was discovered that I have Juvenile (then Rheumatoid) now Idiopathic Arthritis (JIA) when I was 10 years old. It was realized due to the fact there was significant inflammation in my right eye. They did all sorts of tests on me and decided there was no cause for my disorder (funny the disorder came to be re-named idiopathic, which means “cause unknown”). I had some joint problems and a limited range of movement in my knees and hips, and the biggie was my eye. I had cataract surgery when I was 12 years old. I had had injections in my eye prior to that as well as oral steroids to try to combat the inflammations in my eye and other body parts. I struggled with my eye for a long time afterwards, and my bad joints have now just become a fact of life for me. But I have recently started having headaches behind and above my right eye, the same one that I had problems with. My left eye is unaffected, by the way. I decided to go to the ophthalmologist who had tracked my progress previously (it had been 5 years since I had seen an eye doctor due to the fact that I had no insurance). I figured that my headaches and further blurred vision was due to the proteins that stuck to my lens (called senechae..sp?) that was due to the inflammation. Unfortunately, the doc looked at my eye and said there is very little coverage of my lens with the senechae and that I had a “cupped optical nerve”. GLAUCOMA! It was caused by the “pressure” in my eye being continuously too high. Now I am really worried that I won’t ever be able to see again! I have seen a retinal specialist who has referred me to a glaucoma specialist, and also a rheumatologist to be placed on medication for my jointal arthritis. I am so terrified that they will find something wrong with me that no medicine can really help. Each visit with a specialist is going to cost me from $200 to $800, along with travel expenses because one one of the specialists is in my state. I have medicaid, but it does not cover my out of state expenses since the specialists don’t accept out of state medicaid. This is getting ridiculously expensive and scary. I just wish I had some support in all of this. So, has anyone else out there been through this? None of my friends understand it and my mom is the only one who comprehends what is going on because she has been there with me every step of the way. My husband is supportive in it, but he barely understands the common cold, much less a complex rare arthritic disorder… He is there with me, but I have no idea how to explain it all to him. One must understand the workings and parts of the eye before they can comprehend this disorder and what it is doing to me, and he did not excel in his health courses in school. I just want a friend who understands for support, who I can discuss this with. I need the hope and strength of a companion with a similar disorder or even the same one. Please contact me at therin_acean@yahoo.com if you would like to talk. This was written on 10-21-09 but I would respond years from now if I got a letter. Thank you for reading this. God Bless You!
Product Description
This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to juvenile rheumatoid arthritis (also Juvenile arthritis; Juvenile chronic arthritis; Juvenile chronic polyarthritis; Juvenile polyarthritis; Still disease; Still’s disease), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on juvenile rheumatoid arthritis. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms.
is taking personal fitness a bad idea?
all you do is run and it’s a required class .
the problem is, I have arthritis and my whole body aches all the time.
my parents don’t have enough money to take me to the doctors.
I have had juvenile chronic arthritis ( jca ) since I was 5 years old. I am now 13 years old and have been on all sorts of medication including steriods by mouth, and by injctiob. but I’m still really short for my age but I can now walk. I used to be in a wheelchair and was disabled. I also blew up and all around my body I know have stretch marks which I have had since I was 10. But I want to start up dancing now that im copable with moving around. what kind of dancing could I take up
Does anyone have personal or professional experince with this condition? My daughter may have it, and I would love to know what kinds of things to expect, what might happen, any information really. She has an appointment with a Rheumatologist in June.
I have read information about this on the web, I am hoping for more personalazied information. Like how quickly it can progress, what to look for , or watch for, problems or complications to prepare myself for, ect. Just something more personal than a medical description of it.
The best information I have seen on this condition is at : http://www.rheumatology.org/public/factsheets/arth_in_children.asp?aud=pat#1
She is only 4 years old and petite for her age. Concerned about her losing her appetite and other reactions long term…is there anyone who has a relative who was helped by this drug?
My daughter had it last year, she has the mildest one, the doctor says it might go in a couple of years, any info. please…
I will be 18 on the 22nd of this month and I have been experiencing joint pain in my hands and lower arms. Many have said its because I’m still growning but I’m not sure I believe that. I don’t play any sports so it couldn’t be because if that. Do I have Juvenile Rheumatoid Arthritis?
Oh Sorry! I said lower arm. What I ment was wrist.