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Honored Contributor
Posts: 18,752
Registered: ‎03-09-2010

More on Auto Immune

[ Edited ]

Recently I've realized that some people don't really know much about AI and how bad it can be, and some who do have AI themselves don't know that all AI disorders are not alike.  They also have no idea that some can and do kill.

 

Not long ago, those diagnosed with Lupus were usually dead within 5 years, the usual cause was Lupus Nephritis... kidney.  It still kills but there is advancement in treating nephritis.

 

@Trinity3  and I are 50 times more likely to get a heart attack than the average person... and we have. 

 

I've seen people make light of AI, even one who apparently has a form of AI but has no idea not all of us with AI are alike.

 

One of the hardest things for someone who has a chronic illness to deal with are people who belittle them or repeat obnoxious and untrue claims.  Ignorance hurts. Unfortunately, a lot of people seem not to care.

 

Thank you for listening.

Respected Contributor
Posts: 4,715
Registered: ‎03-10-2010

I completely agree with you @Noel7. I also have an AI based disease--alopecia.  You cannot believe the number of people that blame diet or stress or something you've done that they consider bad.  And then there are the snake oil salesmen that try to sell miracle cures.

 

My alopecia is not fatal, but it isn't a pleasant thing to have.  I made up my mind that my job was to educate myself and others about what it is and why diet isn't going to help because it is my immune system attacking my hair.  We Alopecians experience the same kind of unkind comments that other AI sufferers do.

 

I wish you more good days than bad.

Honored Contributor
Posts: 18,752
Registered: ‎03-09-2010

@DrKelli wrote:

I completely agree with you @Noel7. I also have an AI based disease--alopecia.  You cannot believe the number of people that blame diet or stress or something you've done that they consider bad.  And then there are the snake oil salesmen that try to sell miracle cures.

 

My alopecia is not fatal, but it isn't a pleasant thing to have.  I made up my mind that my job was to educate myself and others about what it is and why diet isn't going to help because it is my immune system attacking my hair.  We Alopecians experience the same kind of unkind comments that other AI sufferers do.

 

I wish you more good days than bad.


 

@DrKelli

 

It's so good to meet you and talk to you Smiley Happy  I understand Alopecia and the hurt it can cause, especially for young people who can be bullied.

 

You're a brave lady and I thank you for your response and kind wishes.  I wish the best for you and hope you are successful with trying to educate others, not an easy thing to do.

Honored Contributor
Posts: 18,752
Registered: ‎03-09-2010

The physical pain of AI can be severe, the pain from the ignorance of others can be even worse.

Honored Contributor
Posts: 9,025
Registered: ‎05-23-2011

@Noel7 I've learned so much about AI illnesses since being diagnosed with two of them myself. My symptoms were all over the place and Lupus was thought to be the cause but it turned not to be the case.

 

AI illnesses can affect the entire body, I will admit to having issues from head to toe. At this very moment I'm dealing with body aches and fatigue, but tomorrow I may feel differently. No heart problems but lung and abdominal issues

 

Thank you as well as anyone else with one of these illnesses that bring them up front so that others can learn from them.

You Don't Own Me- Leslie Gore
(You don't Know) How Glad I Am- Nancy Wilson
Honored Contributor
Posts: 30,238
Registered: ‎03-12-2010

I'd rather think most people just don't understand much about it.  There are more than one diseases that fall under this category.

 

I have something called IGG.  I know a few other's who have this.  I periodically have to get infusions that take between 6 to 8 hours.  For me it's usually 8 hours because my blood pressure goes up.

 

My middle daughter has Crohn's Disease.  She used to suffer terribly with it.  In the past few years she's been doing OK.  She's just learned what sets it off and tries to avoid those things.  However, she's going through a difficult time in her life right now (stress) and that is her enemy.

 

Anyway, take care and I hope you feel better.

Honored Contributor
Posts: 18,752
Registered: ‎03-09-2010

@JaneMarple wrote:

@Noel7 I've learned so much about AI illnesses since being diagnosed with two of them myself. My symptoms were all over the place and Lupus was thought to be the cause but it turned not to be the case.

 

AI illnesses can affect the entire body, I will admit to having issues from head to toe. At this very moment I'm dealing with body aches and fatigue, but tomorrow I may feel differently. No heart problems but lung and abdominal issues

 

Thank you as well as anyone else with one of these illnesses that bring them up front so that others can learn from them.


 

My dear friend @JaneMarple

 

I'm so sorry, I know you've suffered a lot, you're a brave lady and so compassionate toward others Heart

Frequent Contributor
Posts: 110
Registered: ‎03-17-2013

@Noel7

My amazing big sister was diagnosed with Lupus in 1975 when not many people had ever heard of it. In fact, I only knew of it from watching an episode of Marcus Welty MD. I know I am dating myself.

5 years later she suffered a massive heart attack at her office Christmas party. It is a day I will never, ever forget.She was 41 years old and the mother of 3 children - 19, 14 and 11 years.  I believe you are correct when you say that many people underestimate the toll that these diseases can take.

I feel for you and for anyone who is suffering.

To all of you I say, take care ❤️

Reggie

 

Esteemed Contributor
Posts: 5,354
Registered: ‎07-17-2010

@Noel7 wrote:

 

One of the hardest things for someone who has a chronic illness to deal with are people who belittle them or repeat obnoxious and untrue claims.  Ignorance hurts. Unfortunately, a lot of people seem not to care.

 

 


Boy, isn't that the truth.  A lot of people seem to assume that whatever "your problem" is could never be their problem.

 

I'm sorry you have to deal with this, @Noel7.  It's not a good hand to be dealt, that's for sure.



"Heartburn Can Cause Cancer" -- www.ecan.org
Honored Contributor
Posts: 18,752
Registered: ‎03-09-2010

@ReggieRagu wrote:

@Noel7

My amazing big sister was diagnosed with Lupus in 1975 when not many people had ever heard of it. In fact, I only knew of it from watching an episode of Marcus Welty MD. I know I am dating myself.

5 years later she suffered a massive heart attack at her office Christmas party. It is a day I will never, ever forget.She was 41 years old and the mother of 3 children - 19, 14 and 11 years.  I believe you are correct when you say that many people underestimate the toll that these diseases can take.

I feel for you and for anyone who is suffering.

To all of you I say, take care ❤️

Reggie

 


Hi @ReggieRagu

 

Thank you for your response.  I hope your sister recovered, that age was so young.

 

A dermatologist told me I might have Lupus when I was in my early 20s, a common time for it to strike.  I never thought much of it until I also saw a TV show, a docudrama starring Brooke Shields.  I remember thinking what an awful disease it was.  I had it then but wasn't diagnosed until later.

 

Thank you for your kindness Heart