View Full Version : My teen age daughter just diagnosed

09-21-2004, 05:50 PM
Hello Everyone,

My 16-year old daughter has just been diagnosed with systemic Lupus. Over the past six weeks or so, she had been complaining of joint pain. She had gotten sunburn in early August while playing in a soccer tournament, and we thought that she had sun poisining. After a couple of weeks, the red "burn" did not go away. She hid it with make-up, so it was difficult to see.

Her joint pain became worse. Her fingertips went numb and were discolored at times. She has sores in her mouth. Her muscles ache. She gets a low grade fever at times.

She is already on .5 milligrams of Prednesone a day, and just started the Plaquinil. (I'm not sure if those spellings are correct.)

Needless to say, we face a future with guarded hopes and lots of prayers. I hope that you don't mind a Dad posting to this board. I know that my daughter has much to come to realize in the days ahead, and I would like to know as much as I can about this disease. My greatest fears involve potentially watching my young, energetic, pretty, and atheletic child wilt like flower before my eyes.

My daughter plays competitive soccer, and is on a nationally, highly-ranked team. I am afraid that this physical game that she loves will not be possible soon, but I hope that I am wrong. Can anyone shed light here? Is it still possible to play atheletics at a high level?

I realize that I must stay positive for her sake, and I also know that the flares can be somewhat manageable. I guess I believe that a person with Lupus must stake their claim on the disease, and not let it stake its claim on the person.

I find it odd that she has been struck by Lupus so quickly, as neither my wife or I know of any close or distant family that have had Lupus. Three months ago, my daughter did start taking an oral contraceptive in order to regulate her unpredictable menstrul cycle.

We wonder if the initiation of an oral contraceptive may have had some kind of impact on her in regard to the start of Lupus. Can anyone shed light on the issue of hormonal change due to oral contaceptives and the onset of Lupus? Our rheumatologist said that there is no corrolation, but from what I have read recently no one really knows for sure.

I would take this disease upon me instead if only I could. Even though my daughter has only been diagnosed for four days now, I already feel her pain, and all of your pain too. I will pray for you. I am hopeful for better days ahead for my daughter and for you. Keep the faith.

A Dad

09-23-2004, 08:59 AM
Hi Dad;
Perhaps I am not the best person to respond to your post as all of the fears you mentioned for your young daughter actually happened to ours and we eventually lost her to this disease. Therefore, I can truly understand and empathize with your fears as a parent of such a young and energetic child.
Let me say this, many people do continue to live healthy and active lives, especially those like your daughter who caught the illness early and began treatment immediately. Also in her favor is the fact that she is so active and exercise is one of the best weapons against this disease.
She will experience some days of true and unexplainable fatigue and she will need to have productive rest periods to overcome that fatigue. Encourage her to participate in any physical activity that she wants to pursue. However, be very understanding when she reaches a point where she can no longer particiapte and make sure that you let her know that she IS NOT a failure..she just needs to understand the changes in her body and try something new. Remember, many people have achieved remission with this disease, especially when it is caught early and treated eary!! I was always very physically active, I now swim laps in order to maintain a regualr exercise program as it is not so strenuous on my body! She may need to try many different types of sports and/or activities..encourage her in this area!
Best of all and most importantly in her favor, she has a loving and supportive and understanding family. That, alone, will make the biggest difference in her outlook on life, her ability to cope with her illness and her self-esteem.
While many people are presidsposed to Lupus, there need not be a history of Lupus. Some families are predisposed to auto-immune diseases due to genetics and there are so many different auto-immune diseases out there. No one knows the exact cause of Lupus (which is why there is not cure yet!) and there are so many variables which can lead to an onset of the disease. I could find no definative evidence linking oral contraceptives to an onset of LUPUS. I think that it is more an age factor and the hormonal changes occuring within the body that can make the disease active. That is partially why it occurs mostly in young women of your daughters age and/or of child bearing age!!
We are here to help you as much as we can..feel free to post at any time that you may have a question, concern or just want to share with us. This forum was designed to provide as much support as we can give.
I wish you and your daughter the very best!!!
Stay in Touch
Peace and Blessings

09-28-2004, 12:53 PM
Dear Dad,

I feel for you. You and my Dad would have a lot in common , as he has 2 daughter with SLE.

My sister's symptoms did start after she started birth control pills. My sister had since stopped them, and has noticed a marked improvement in her symptoms. She has done some research and has found others in this same situation.

BCPs were not the problem for me. I have kidney involvement, and don't use BCPs.

I think it would be worth it to stop the BCPs. I use and IUD for birth control, which might not be the best option for her, but there are many other non-hormonal options out there.

Good luck - and let me know if there is anything else I can help with.


09-28-2004, 11:12 PM
Welcome Dad :lol:

It sounds to me like your daughter is a very lucky young lady. You are there for her and are doing all you can to make this illness less of a burdan on her. The days ahead could hold many diffrent out comes. Some people have fairly easily controlled lupus and it stays mild. Others havr more servere cases and spend a lot of time battling their lupus. While reading your post I got a good feeling that having you there to hold her up will make it just that much more comforting for her. I wish my family had felt the way you do and looked up a little about lupus when I became sick. My parents I supose wanted to try and pretend all is well and that if they don't see it, It's not really there. I was very active before I became ill. I was a competitive swimmer and I skied every chance I got. I loved the rush of flying down those big beautiful white mountains. Because a lot of my syptoms surrounded my joints I had a hard time continueing my down hill sking. It just became to painful. It's been 9 years since I have been down hill sking. I still swim but at a much limited pace. Now I do it all for pleasure and exercise. Chances are though that since your girl was caught early she will be able to keep on keepin on. Keep in close contact with her rheumy and Listen to her. She will be the best judge of what she can and cannot do. Just love her and be open with her and she will do well. Best of luck to you and your whole family during these trying times. A strong support system is key. She has that down already. She is in my thoughts lots of HUGGIES! ~Lucy :D

Leigh Busby
03-09-2005, 03:08 PM
Dear Dad,

I'm sorry to hear about your daughter, but I hope I can give you some comfort.

First of all, I wish my parents would have been as concerned! They're not bad parents, but before I was diagnosed (at 15, I'm now 44) they did not take my complaining seriously - I mean I couldn't straighen my fingers, and had difficulty dressing for school and walking, etc.

I believe my onset was due to an extremely stressful event: moving from the suburbs to a rural area when I was a high school freshman. I was very stressed from the move, and that's when my major symptoms began. Luckily, two years later I had a blood test that suggested something wrong (this was in 1977 and not as much was understood then as today). I was diagnosed and was a bit relieved to know there was really something wrong with me, although upset there was not a cure. I started swimming a lot and received my life guard license the next year. I belive the swimming helped me tremendously (heated indoor pool). Since I've gotten older, I've learned to control my stress levels and that's helped much. I'm wondering if your daughter has had a stressful event that could be attributable. I was on birth control after I developed lupus. Now that I'm in my mid-forties, the birth control has helped with perimenopause joint pain. Yoga has also substantially helped. I believe the right kind of exercise, combined with relaxation has helped me tremendously. I also take Naproxin. I wonder if puberty's hormonal changes has something to do with the onset.

I'm happy your daughter has the parental and medical support that I did not have.

Take care and good luck.

08-11-2005, 08:54 AM
hey dad,
im 17, and i was dignoised 6 years ago.

dont worry about your daughters soccer, i play competitive tennis at a high level. if she works at it she can still play

give her my best of luck,