PDA

View Full Version : my daughter has lupus



kim,l
07-10-2011, 04:37 PM
well sarah my 23 year got test results back today she has positively tested for lupus she will be seeing my rheumi on friday i have long since suspected this but it does not make me feel any better looks like my mother gave it to me and then i gave it to sarah it was my worse fear with everything else that is going on with her looks like her fast pulse rate seizures, chest , pain bladder problems fatigue, joint pain,cold sores the diziness headaches, endimetriosis brain fog it is all linked and as she was told it was in her head just like many of us she also suffers from lung problems, i know we like to have things in common with our children but this is not one of them i am so sad for her thanks for listening everybody. looks like there just may be a genetic link after all for some people. hugs kim l

tgal
07-10-2011, 05:10 PM
Oh Kim I am so very sorry! Like you my daughter is being monitored by a rhuemy and I know the pain down in my stomach every time I think of her having this! My heart goes out to both of you. I wish there was something that I could say or do to make it better but there isn't. Just know that I am here for you if you ever need to talk

Bonita
07-10-2011, 06:39 PM
I am so sorry to hear this you and your family are always in my prayers. Love Bonita

lovedbyHim
07-10-2011, 06:45 PM
Kim as I watch one of my 3 daughters suffer for years with various medical issues, I have a heavy foreboding in my heart that it may be AI. Now you hear the words we dread. I'm so sorry. Gosh you have had a long haul haven't you. Please know I truly ache for you.

Numandi Botes
07-10-2011, 11:53 PM
Hi Kim,

I am so sorry to hear about your daughter. Our 16 year old daughter was diagnosed in February this year with Lupus SLE, after being terribly sick since last year August - if there is anything I can help you with, please do not hesitate to ask.......

Gizmo
07-11-2011, 03:06 AM
Kim, my 19 year old daughter was finally diagnosed with undifferentiated connective tissue disease about 4 years ago, after many years of problems. It was a mixed blessing, and I imagine there is some relief on your part - along with the pain and worry. The good news is, that many people with lupus have normal lives once they are started on treatment. I knew a woman who was in kidney failure and paralyzed from lupus when she was in her 20's. After being diagnosed and treated, she recovered and works full time as a teacher with little residual effect. As you know, SLE is not a death sentence, and there are a fair number of treatment options out there. I wish you and your family all the best and I hope you and your daughter will become regulars with this great group of people.

kim,l
07-11-2011, 03:36 AM
thankyou everyone for your kind words gizmo i have been regular on site for 4 years but i was hoping my children would not get lupus but that is the way life takes us we roll with the punches hopefully rheumi appointment will go well and he will start to treat her as well hugs kim l

Gizmo
07-11-2011, 03:40 AM
thankyou everyone for your kind words gizmo i have been regular on site for 4 years but i was hoping my children would not get lupus but that is the way life takes us we roll with the punches hopefully rheumi appointment will go well and he will start to treat her as well hugs kim l

Oops, sorry Kim. I know you are a regular and just didn't look closely at who posted. I really feel for you, being a mom is the most painful job you'll ever love.

steve.b
07-11-2011, 03:44 AM
kim, hopefully things will be manageable.
it is never good news to hear someone has an ailment.
it is even harder, when we know we has helped to cause it.

Numandi Botes,
welcome to our site.
it is good to meet new friends.

SandyR
07-11-2011, 06:50 AM
well sarah my 23 year got test results back today she has positively tested for lupus she will be seeing my rheumi on friday i have long since suspected this but it does not make me feel any better looks like my mother gave it to me and then i gave it to sarah it was my worse fear with everything else that is going on with her looks like her fast pulse rate seizures, chest , pain bladder problems fatigue, joint pain,cold sores the diziness headaches, endimetriosis brain fog it is all linked and as she was told it was in her head just like many of us she also suffers from lung problems, i know we like to have things in common with our children but this is not one of them i am so sad for her thanks for listening everybody. looks like there just may be a genetic link after all for some people. hugs kim l

Kim - you didn't give it to Sarah. Giving is a conscious act. You did not consciously choose for her to inherit your family's lupus legacy any more than your mother choose that for you. I am sad to hear that she is also following that path but I am glad for her that she is already in a network of support and understanding and won't have to fight her family for the sake of her health or deal with years of uncertainty in regards to her medical diagnosis. She doesn't have to do any of that because of you having walked in her shoes before she was able to wear them. It does seem unfair that she too is now a Lupus Warrior and for that I am sorry. I know thinking it's the case and finally finding out it's the case are two different things and there is a grieving period involved with actually being given this label and for that I am sad to hear this news. XOXO Sandy

Elo
07-11-2011, 09:17 AM
I'm so sorry :(
If there's any consolation to it, it's that it's a disease you know (though that is also one of the hardest parts). You can share with her the things that work for you, go to the same doctors (which is wonderful if you've tried a lot already), and have a better understanding.
Like you said though, we have many things in common with our children...but that shouldn't be one of them. =(

Peridot20_Gem
07-11-2011, 05:01 PM
well sarah my 23 year got test results back today she has positively tested for lupus she will be seeing my rheumi on friday i have long since suspected this but it does not make me feel any better looks like my mother gave it to me and then i gave it to sarah it was my worse fear with everything else that is going on with her looks like her fast pulse rate seizures, chest , pain bladder problems fatigue, joint pain,cold sores the diziness headaches, endimetriosis brain fog it is all linked and as she was told it was in her head just like many of us she also suffers from lung problems, i know we like to have things in common with our children but this is not one of them i am so sad for her thanks for listening everybody. looks like there just may be a genetic link after all for some people. hugs kim lHi Kim,

I am so sorry mate to hear this but mine was inherited like you know just the same and have they said your daughter's seizures come from it as mine did, i've been having bladder problems which the Lupus started and i'm now taking tablets to stop it.
It's such an early age and it's terrible at 23 and even our younger member's as you've got no life once it starts but i do hope your rheumo can help your daughter inthe best ways possible.

My love goes out to you both Terry xxxxxxxx

magistramarla
07-12-2011, 01:04 PM
Hi Kim,
I'm sorry to read this. We've all discussed how much our AI diseases seem to be hereditary, despite what the docs try to tell us.
It does help you to make more sense of the symptoms that Sarah has been having, though.
Take her by the hand and guide her through this, Mum. Who knows? It might draw the two of you closer together.
Hugs to both of you,
Marla

Saysusie
07-12-2011, 03:17 PM
This is a very difficult thread for me .... however, I did want you to know how sorry I am to hear that your daughter has been diagnosed with Lupus. Please do not blame yourself for her having the disease. If family members are genetically predisposed to having some type of auto-immune disorder, and they are sharing some of the same stressors and/or aggravating factors (environment etc.), then I suppose that it is quite possible for family members to have the same disease.
You have been with us for quite some time, you've shared and gained a lot of knowledge that will be so helpful to your daughter as you help her through this. Also, I am sure you know that we are always here for both of you :-)

Peace and Blessings
Namaste
Saysusie

kim,l
07-13-2011, 12:52 AM
thankyou all for kind comments sarah sees rheumi friday hopefully medication will start and she will feel better