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Old 10-04-2006, 07:35 PM   #1
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krystal1986 HB User
anyone else the only known case in their family??

i was just wondering if anyone else is the only person in their family to have lupus... i was diagnosed with it at the age of 2... i am now 20 and i am the only person in my family who has it.... how do you get your family to understand your pain and fatigue??? please let me know thnks krystal

 
Old 10-04-2006, 11:34 PM   #2
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Re: anyone else the only known case in their family??

I have just been dx w/.lupus...they think, anyway. I'm not very satisfied with the information that I have received, which is very little. I too am the only one in my family w/ the dx. and I am just now trying to educate mt family but it is hard to explain the chronic pain and the mood/depression swings that accompany it. I don't know much about it myself, due to my drs. not being all that helpful. I have severe muscular/joint pain in the a.m. and can't even schedule anything until late a.m. or after.
What are your symptoms and how were you dx? I would appreciate any info. you might have.
thank you for your help
susan

 
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Old 10-04-2006, 11:35 PM   #3
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Re: anyone else the only known case in their family??

Krystal, also....what meds. are you taking and do they work? what is the long term dx?
thanks again
susan

 
Old 10-05-2006, 12:39 AM   #4
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Re: anyone else the only known case in their family??

It's interesting doing a little digging around. Nobody in my family had heard of lupus, and I haven't gone to great lengths to describe it for the sake of the neices and nephews.

But after much 'interrogation' I have discovered that most of my father's siblings died of what could have been (sound like) autoimmune conditions. He himself has APS (had it for twenty years with blood clots to the lung etc.) diagnosed (finally, at 70!!!) with rheumatoid arthritis, has major malar rash but never been diagnosed with lupus.....

I just think medicine has moved along so much in recent years that these things are recognised now. Past generations have had to cope without any recognition, poor them.

Last edited by georgie04; 10-05-2006 at 12:42 AM.

 
Old 10-05-2006, 04:35 AM   #5
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Suni321 HB User
Re: anyone else the only known case in their family??

Hi Krystal, that's a really good question. It's surprising how early they caught it with you. I think it's less than 5% of Lupus patients do have a family member with SLE. Some things to look at are relatives that suffer from conditions such as Rheum. Arthritis or Raynaud's Phenomonen or any auto-immune type illness. According to the research they seem to feel that these other conditions are somehow connected as part of a family's "history".

Personnally I am the only one in my family with full SLE. However I have multiple members of my family with Rheum. Arthritis & Raynauds & Thryoid issues. I do have one family member that it appears they might have SLE - they do have an some kind of an auto-immune disorder but, they are still being tested & evaluated. Which always makes me wonder - did I have the gene tendency & then do something that "triggered" it? With all the research being done I hope soon they will be able to answer that question for us all.

Do you have anyone in your family history that has Rheumatoid Arthritis, Raynauds & or other auto-immune diseases?

Last edited by Suni321; 10-05-2006 at 04:37 AM.

 
Old 10-05-2006, 07:36 AM   #6
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: anyone else the only known case in their family??

Dear Krystal, Similar to what Georgie just wrote, I REALLY wonder about my mom's side. Her mother died suddenly in her mid-50's of kidney failure.

And my mother, one yr. when having gallbladder surgery, was told that she had only one functioning kidney, which was quite a shock. My mom also had heart issues for years, Raynaud's syndrome, and "sticky blood" for which she took Coumadin for over 30 years.

My sister (my only sibling) has asthma & a thyroid abnormality that's being watched. And I was Dx'ed with the subacute cutaneous "subset" of systemic lupus in 2000, at age 47, after years of targetlike, nonscarring arm/torso rashes, anti-Ro, anemia, etc.

Best wishes, Vee

 
Old 10-05-2006, 06:52 PM   #7
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krystal1986 HB User
Re: anyone else the only known case in their family??

yah... the doctors were surprised then they diagnosed me with it too... i was the first known child case in north america at that time...right now the doctor has me on tylenol #2 with codine, and novo-difenac 50mg (diclofenac sod ec 50mg)...they worked for the first little bit but now they aren't working as well so i am going to have to go and get something else perscribed..i really don't remember how i was diagnose because i was so young...some symptoms that i get include: butterfly rash on the face...brusies on my arms on legs... small pimple like rash on my upper hands and feet...swollen and sore joints... stiff neck and back etc etc...

Last edited by krystal1986; 10-05-2006 at 06:53 PM.

 
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