Sunday, May 26, 2024

Lupus Awareness Month

 Hi Everyone!

Just a few more posts on lupus awareness month. Did you know that, in the US, some 25,000 children and adolescence are diagnosed with some form of lupus? The impossible thing is.... MOST doctors don't know the symptoms. They look at the one thing that is bothering the child at that moment. So, if a child has a malar rash and a low grade fever, the child is sent home with instructions to take tylenol, keep the skin cool and the rash will go away when the fever does. WRONG!!! I had many many symptoms of lupus when I was a kid and nothing was ever done about it. 

 If you have a child, grandchild, or a friend with a child that have lupus symptoms MAKE sure they get to a pediatric rheumatologist!
A few more symptoms, they are the same for kids and adults.

I didn't know this until the first of this year when my lungs hurt for 2 months. Nothing eased the pain, except prednisone. You can't take a full breath, cough or sneeze, and walking up the stairs is an ordeal that I don't want to go through again.

Most of you know I call my feet, lupus feet. I have had trouble with my feet since I was a small child. My parents had to buy special shoes for me. In 1954 my parents paid $35.00 for a pair of special shoes for me. That was a lot of cash in those days. I don't know how they did it all my life with 5 other kids. Just a few weeks ago I spent $175.00 for special shoes. 

I really like these memes giving out information on lupus. They are not complete or in depth but it gives you a good foundation of what lupus is and how people may feel. 
I was in remission for the last 9 years. Then, lupus just thought it can do what it wants. Most of you know how sick I have been. Like one flippen thing after another. 
The one thing I can pass on to people with lupus and other autoimmune, is to never give up! Get out of bed, move, stretch, take a shower and get dressed. It may take you longer to do things, but you must always take control and fight for your life.

Wishing all of you good health.


Tom said...

...I never knew much about Lupus!

Christine said...

Thanks for all the information -Christine

Debra She Who Seeks said...

Sounds like medical schools need to do a LOT more training of young doctors about lupus!

Iris Flavia said...

Maybe that´s wrong with my feet since years? The doc is sadly on holiday... but I´ll mention it when he´s back.

I think a parent will do anything to help their child.
My Niece has DiabetesI and her parents went through a lot to help her.

To being strong and enjoying life no matter what...

Rita said...

I think we have too many "specialists" who don't look at the whole person anymore. All kinds of autoimmune diseases are overlooked--probably because they're hard to pin down because they have multiple symptoms. But it's not like they haven't been around for a long time--geez!

I love the last one! So sorry you have had to deal with this for so long. I didn't realize you have had this since you were a child. I didn't think I could admire you any more than I already do. :) :)

David M. Gascoigne, said...

I suspect that most parents don’t consider Lupus when their child is sick, so go along with the doctor’s advice. It is your dreadful experience that has made you ultra conscious of potential warning signs.

baili said...

this is great post dear Nichole
since i have start to read your sharing regarding lupus i have many possibilities in my mind about having same disease .worst part no doctor tells you about it or may be they are totally ignorant of it
what i agree that we should get up and fight always because life is priceless gift with beauty and wonders . i am grateful God has given me a fighter spirit that keeps me on toes all the time
hugs and lots of love !

My name is Erika. said...

That's really interesting how children/teens show signs and they are usually not tested for lupus. It's not that uncommon or rare, so you would think it would be better to test and find out about it early in life. Have a great start to the new week.