What is Sarcoidosis?? --- NHLBI

What Is Sarcoidosis?

Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. It can affect various organs in the body.

Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.

These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is destroyed, the cells and the inflammation go away.

In people who have sarcoidosis, the inflammation doesn't go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.

Overview

Sarcoidosis can affect any organ in your body. However, it's more likely to occur in some organs than in others. The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest).

The disease also often affects the eyes and the liver. Although less common, sarcoidosis can affect the heart and brain, leading to serious complications.

If many granulomas form in an organ, they can affect how the organ works. This can cause signs and symptoms. Signs and symptoms vary depending on which organs are affected. Many people who have sarcoidosis have no symptoms or mild symptoms.

Lofgren's syndrome is a classic set of signs and symptoms that is typical in some people who have sarcoidosis. Lofgren's syndrome may cause fever, enlarged lymph nodes, arthritis (usually in the ankles), and/or erythema nodosum (er-i-THE-ma no-DO-sum).

Erythema nodosum is a rash of red or reddish-purple bumps on your ankles and shins. The rash may be warm and tender to the touch.

Treatment for sarcoidosis also varies depending on which organs are affected. Your doctor may prescribe topical treatments and/or medicines to treat the disease. Not everyone who has sarcoidosis needs treatment.

Outlook

The outcome of sarcoidosis varies. Many people recover from the disease with few or no long-term problems.

More than half of the people who have sarcoidosis have remission within 3 years of diagnosis. "Remission" means the disease isn't active, but it can return.

Two-thirds of people who have the disease have remission within 10 years of diagnosis. People who have Lofgren's syndrome usually have remission. Relapse (return of the disease) 1 or more years after remission occurs in less than 5 percent of patients.

Sarcoidosis leads to organ damage in about one-third of the people diagnosed with the disease. Damage may occur over many years and involve more than one organ. Rarely, sarcoidosis can be fatal. Death usually is the result of complications with the lungs, heart, or brain.

Poor outcomes are more likely in people who have advanced disease and show little improvement from treatment.

Certain people are at higher risk for poor outcomes from chronic (long-term) sarcoidosis. This includes people who have lung scarring, heart or brain complications, or lupus pernio (LU-pus PAR-ne-o). Lupus pernio is a serious skin condition that sarcoidosis may cause.

Research is ongoing for new and better treatments for sarcoidosis.

February 2009

www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html

Naimah

Living With Sarcoidosis --- NHLBI

This is from the National Heart Lung and Blood Institute Disease & Conditions Index, and Online Site that I've found to have reputable information on Sarcoidosis..

As you remember from my first Post, I mentioned that there are a lot of Online Sites out there that are giving Misinformation about this Disease....but after reading what they have on Sarky....I am impressed, they were right on point with their information......so I decided to share some of their Articles with you.



Living With Sarcoidosis

Sarcoidosis has no cure. However, you can take steps to manage the disease. Get ongoing care and follow a healthy lifestyle. Talk to your doctor if you’re pregnant or planning a pregnancy.

Ongoing Care

Getting ongoing care is important, even if you don't take medicine for your sarcoidosis. New symptoms can occur at any time. Also, the disease can slowly worsen without your noticing.

How often you need to see your doctor will depend on how severe your symptoms are, which organs are affected, what treatments you're using, and whether you have any side effects from treatments. Even if you don’t have symptoms, you should see your doctor for ongoing care.

Your doctor may recommend routine tests, such as lung function tests and eye exams. He or she will want to check to make sure that the disease isn’t damaging your organs.

Discuss with your doctor how often you need to have followup visits. You may have some followup visits with your primary care doctor and others with one or more specialists.

Lifestyle Changes

Making lifestyle changes can help you manage your health. For example, follow a healthy diet and be as physically active as you can. A healthy diet includes a variety of fruits, vegetables, and whole grains.

It also includes lean meats, poultry, fish, beans, and fat-free or low-fat milk or milk products. A healthy diet is low in saturated fat, trans fat, cholesterol, sodium (salt), and added sugar.

For more information on following a healthy diet, see the National Heart, Lung, and Blood Institutes's Aim for a Healthy Weight Web site, "Your Guide to a Healthy Heart," and "Your Guide to Lowering Your Blood Pressure With DASH." All of these resources include general information about healthy eating.

If you smoke, quit. Talk to your doctor about program and products that can help you quit. Also, try to avoid other lung irritants, such as dust, chemicals, and secondhand smoke.

Emotional Issues

Living with a chronic disease may cause fear, anxiety, depression, and stress. It’s important to talk about how you feel with your health care team. Talking to a professional counselor also can help. If you’re feeling very depressed, your health care team or counselor may prescribe medicines to make you feel better.

Joining a patient support group may help you adjust to living with sarcoidosis. You can see how other people who have the disease have coped with it. Talk to your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

Pregnancy

Many women who have sarcoidosis give birth to healthy babies. Women who have severe sarcoidosis, especially if they’re older, may have trouble becoming pregnant. In some cases, sarcoidosis may get worse after the baby is delivered.

If you have sarcoidosis and are pregnant or planning a pregnancy, talk to your doctor about the risks. Also, if you become pregnant, it’s important to get good prenatal care and regular sarcoidosis checkups during and after pregnancy.

Some sarcoidosis medicines are considered safe to use during pregnancy; others are not recommended.


www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_livingwith.html






Naimah

The Book....."Color Me Sensitive"

While surfing the net, I came across a book titled "Color Me Sensitive"....it is about a Woman's Journey to Find Herself through Disease.

I have yet to purchase it, but after reading what I have online about it....I think it will be my next purchase about Sarky (it is only $15. so I think I can swing that, lol).

The first, and only....book that I have on Sarcoidosis, is called: "Sarcoidosis....Medical Mystery Uncovered" by Sandra Conroy.
I purchased that book 17 yrs. ago after I was diagnosed.....and I often refer back to this book when something new develops inside of me.


This is what I read online about this book....


About the Book

"...in order to make a difference, in order to affect change, you must be willing to share at the deepest level."
June Saunders Grayson
Color Me Sensitive is a courageously candid and honest story of a woman who, confronted with a life-threatening disease, is forced to define what is truly important and real in her personal life. The disease, sarcoidosis, remains a medical mystery. Yet, in spite of the uncertainty and complications that faced her, June Saunders Grayson learned not to be defined by her diagnosis and battle with sarcoidosis; instead, fueled by the disease, discovers her true essence through love, family and most importantly, a solid faith in God.
Describing her dramatic and sudden diagnosis, Grayson takes the reader on a road map from meaningful turning points in her childhood to self-discovery realized in adulthood. Grayson’s conversational and engaging style of writing provides sometimes humorous, at times unsettling descriptions of her challenges with the disease, while illustrating internal personal turmoil, private, almost voyeuristic accounts of her troubled marriage, all while raising two young boys, and managing a demanding career. Visually compelling metaphors catapults the reader through the author’s spiritual growth.

"There is no doubt that I have exposed many layers of my life in this book," says June, 'but I feel that in order to make a difference, in order to affect change, you must be willing to share at the deepest level. That is what I hope and pray has been accomplished with this story."

Grayson says that she feels strongly that although her struggles continue, the disease was a gift to her. A gift that she believes will allow her to be a vehicle to make a difference.

Sarcoidosis is an auto-immune disease that can be debilitating and sometimes becomes fatal.

Sandra Conroy, founder and president of the National Sarcoidosis Resource Center and a sarcoidosis patient herself, provides the foreword for the book.

colormesensitive.com




Sounds interesting doesn't it.....(smile).







Naimah

"I Long for a Normal 24 Hours"

What is 'Normal' anyway.....I can't even remember a Normal Day.

Since the Birth of my Grandbabies....I've dreamed of being able to go outside and romp around the grass with them (when the weather gets warmer that is), but Honestly, I don't think that is going to be a Reality for me.....the Reality for ME is this:

I'll have to some how gate up the whole entire yard, park MY Butt somewhere Neutral (in a chair nearby), make sure I have "reinforcement" in case things get out of hand...like them trying to get out of the barricade I'd set up for their protection (and My "helper")....and try and act like I am playing along right with them......Now how & the heck am I gonna be able to pull THAT off, hhmmm......
they are smart lil kiddies....I think they may figure out what is going on, don't you.

While deciding what to write on this, I tried to think back at the times when I was able to 'do things'.....and I started searching, and it brought me back to when I was in my 20's I guess....boy, they were the days....I was soooo much more faster then, even in Thought.
I used to be able to remember sooo much, but now.....not soo much.

I remember getting up for work, rushing around to make sure things at home were good while I was out.....but now, I couldn't even see myself leaving out for 8 hours a day and doing Anything.....my thoughts would be on "needing to get home to take my meds. before I had a Flare Up @ work".....the focus would deff. be off of work.
Or the fact that I would have to get up extra, extra early in order to be @ work on time, because I would be in soo much pain trying to get dressed & everything.....it would just be a total disaster.

And because I used to be an Office Assistant, the whole sitting for a long time would not go over too well either.

I often find myself watching other people go about doing their Day to Day things....and say to myself "how much I miss that".
How THEY, should thank GOD for being able to do the little simple things in Life....like, being able to bend down and pick up their lil one without fail, Or be on their knees doing whatever one does on their knees, lol....THAT'S a biggie for Me.
Whenever I see someone on their knees....I cringe, because I know how it feels to be on mine.....YIKES!!!

I used to be a Gardener....and I loved it soo much, but those days are long gone for me....even if I took my pain meds. prior, after the work was done....I am going to be in some serious trouble later on.


I try to stay possitive about those things....I mean, there was a time when I COULD do them.....so I should be greatful that I DID engage in such things at one time, but at the same time....I miss them and I wish I could do them again......(sighhh).


I worry about My future with this illness......what it holds for Me.


I pray that it doesn't get worse to the point where I am Totally Dependent upon the ones I love......so I try to stay possitive!!!





Naimah

Can't sit for too long.....Can't move around too much.

Heyy ALL......


This Sarky thing is something else boy......

Your doctors tell you "you need to exercise, keep yourself moving" (because of the arthritis)....but if you move too much with Sarky, "IT" will let you know about it later on......so you figure, "I better sit for a while"....noooo, then if ya do that....it hurts like the dickens to try and get back up again.

If I go and do a simple thing like the Laundry Or Food Shopping, I better believe that later on in the day (Or night, depending on what time you were doing it)....you are going to be hurting.
I discovered this, Last Year....when I would come back from doing the Laundry in the morn.....I'd come back like I'd ran a Marathon......and half way through Food Shopping, I would want to quit...right then and there.....just leave my basket full of Food, and head out to the car & go home!!!

It is truly horrible......

Sitting down to watch a half hour tv program, would required me to get up every now & again....to "stretch my legs"....and that's ONLY IF I could get up in the first place.

I am sure those who have Sarky invading their Bones, Joints & Muscles can relate to what I am saying.....and even saying it, may not fully explain what We feel.

I often tell my husband....."I wish, just for ONE DAY...that you and others could Feel what I Feel"...not that I want anything bad to happen to them....I just need people to know on a personal level, what I go through each day and what I suffer with......so that they know I am not "playing" Or "faking"....because that is what I feel sometimes, like they think I am "putting on" Or something.

This is For Real ya'll.....and it is not a Game!!!!







Naimah

THANK YOU HUMMY......!!!!

Thank You, for Helping Me in My Quest to Bring Awareness to this Disease that "I" and soo many others Suffer with.....by making My Blog appealing to the Sight with Your Artistic Beauty.




I can't THANK YOU enough Hummy.....for Blinging out my Blog for Me.....You did a Wonderful Job......."Ya Really Hooked a Sista Up Gurl".

And if any of you need any help on yours.....SHE IS THE ONE TO CALL!!!, lolol.

LOVE YOU, LOVE YOU, LOVE YOU....for being so kind in helping me.....you are FAB.


May ALLAH (swt) REWARD YOU immensely for being the KIND & PATIENT person that you are......AMEEN.




You are INDEED a True Friend......

Naimah