Autoimmune disease articles

[CalamityJane]

Jane

PS from my last posting ... if you hear back from them can you let us know what they say, please? It will be interesting to find where they are up to with their research ....

Of course!  Of that, there is no doubt, but I'll be *very surprised* if I get an answer. And I agree with your post before this one.  Anything that can come from research and newly discovered treatments is valued.

I wonder......in 50 - 70 years........what'll they be treating our skin problems with?  Sorry that I won't be here.....but our children might!  That's a warm thought in my frozen environment!

Jane
PS do you have the spell check button on your 'post reply' window?  I think I've lost my mind.........*sigh*

[bunnie]

This is the link for the Immunology Scientist Polly Matzinger. However, if you type in the name loads of links will come up. I first heard of this scientist in 1993 in a BBC Documentary. I sent for a transcript of the programme, and I still have it. reading about this Judas enzyme and Polly Matzingers school of thought, closely resemble one another, except that I think the process of this "mechanism" or activation is given another name.
http://www.genetics.wayne.edu/asg/polly.html

[bunnie]

More Interesting links.
http://www.niaid.nih.gov/publications/pdf/ADCCFinal.pdf

[LIGA girl]

Hi Bunnie

this document, above, is very interesting and contains lots of great stuff for informing in all sorts of areas. I hope the report gets acted upon so that autoimmune disease sufferers get some relief and people at risk of getting an autoimmune disease can take preventative steps. How and where did you find it?

[bunnie]

HI LG i was doing a search, because I had read somewhere that diseases such as ours have devastating affects on a persons life and that they were trying to have this listed onto the stat books for disabilities. Most interesting to me was page 18 (introduction, last paragraph) because everything on there has happened to me, giving up my business and livlihood, just everything, and I'm now trying to find out if I as a sufferer can help to have this passed in the government.
Link to the meaning of the word Heterogeneous
http://www.yawiki.org/h/1148368091637.html

[LIGA girl]

Hi Bunnie

I agree re the devastating effects on life ...I now have a disability pension that both derms did not want to support me in getting, tho I am fortunate that eventually one of them and my GP did, but it was a difficult process and I had to go thru the first level of the appeal  process to get it. I will have to reapply  in future too if I do not get better as it is not a permanent thing. There is a list of conditions here that automatically qualify one for the disability pension but autoimmune diseases are not mentioned. Blindness, BTW is one that automatically qualifies here.

Some lobbying to govt may make things easier for those who follow on from us .....

V

[bunnie]

Hi LG, its the same thing...of or pertaining to heterogenisis.

[bunnie]

Hi LG Sorry you are correct it is my spelling . I have corrected it. Here a link with photos of LIGA, for anyone reading.
http://dermnetnz.org/immune/linear-iga.html

[bunnie]

A good link for Lupus....
http://www.lupusuk.com/sitemap.asp

[LIGA girl]

A nice overview article from the  Pemphigus Foundation website: no author is cited for this one ...

What Are Autoimmune Diseases?

The word "auto" is the Greek word for self. The immune system is a complicated network of cells and cell components (called molecules) that normally work to defend the body and eliminate infections caused by bacteria, viruses, and other invading microbes. If a person has an autoimmune disease, the immune system mistakenly attacks self, targeting the cells, tissues, and organs of a person's own body. A collection of immune system cells and molecules at a target site is broadly referred to as inflammation.

There are many different autoimmune diseases, and they can each affect the body in different ways. Pemphigus vulgaris, the most common of the pemphigus diseases, effect the skin and mucous membranes. In multiple sclerosis the autoimmune reaction is directed against the brain. In Lupus, one person may have affected skin and joins whereas another may have affected skin, kidney, and lungs.

Ultimately, damage to certain tissues by the immune system may be permanent.

How Does the Immune System Work?
The immune system defends the body from attack by invaders recognized as foreign. It is an extraordinarily complex system that relies on an elaborate and dynamic communications network that exists among the many different kinds of immune system cells that patrol the body. At the heart of the system is the ability to recognize and respond to substances called antigens whether they are infectious agents or part of the body (self antigens) Most immune system cells are white blood cells of which there are many types. An antibody binds to an antigen and marks the antigen for destruction by other immune system cells.

How Are Autoimmune Diseases Diagnosed?
The diagnosis of an autoimmune disease is based on an individual's symptoms, findings from a physical examination, and results from laboratory tests. Autoimmune disease can be difficult to diagnose, particularly early in the course of the disease. Symptoms of many autoimmune diseases – such as fatigue – are nonspecific.

In some cases, A specific diagnosis can be made. A diagnosis shortly after onset of a patient's symptoms will allow for early aggressive medical therapy; and for some diseases, patients will respond completely to treatments if the reason for their symptoms is discovered early in the course of the disease.

Although autoimmune diseases are chronic, the course they take is unpredictable. A doctor cannot foresee what will happen to the patient based on how the disease starts. Patients should be monitored closely by their doctors so environmental factors or triggers that may worsen the disease can be discussed and avoided and new medical therapy can be started as soon as possible. Frequent visits to the doctor are important in order to the physician to manage complex treatment regimens and watch for medication side effects.

What causes autoimmunity?
The immune system normally can distinguish "self" from "non-self." Some lymphocytes are capable of reacting against self, resulting in an autoimmune reaction. Ordinarily these lymphocytes are suppressed. Autoimmunity occurs naturally in everyone to some degree; and in most people, it does not result in diseases. Autoimmune diseases occur when there is some interruption of the usual control process, allowing lymphocytes to avoid suppression, or when there is an alteration in some body tissue so that it is no longer recognized as "self" and is thus attacked. The exact mechanisms causing these changes are not completely understood.

Are they inherited?
The genes people inherit contribute to their susceptibility for developing an autoimmune disease. Certain Diseases can occur among several members of the same family. The ability to develop an autoimmune disease is determined by a dominant genetic trait that is very common (20 percent of the population). This suggests that a specific gene or set of genes predisposes a family member. The genetic predisposition alone does not cause the development of autoimmune diseases. It seems that other factors need to be present as well in order to initiate the disease process. In addition, individual family members with autoimmune diseases may inherit and share a set of abnormal genes, although they may develop different autoimmune diseases. For example, one first cousin may have lupus, another pemphigus, another Sjorgen's syndrome. It is important for families with members who have an autoimmune disease to mention this fact when another member of the family is experiencing medical problems that appear to be difficult to diagnose.

What are the types of autoimmunity?
Particular autoimmune disorders are frequently classified into organ-specific disorders and non-organ-specific types. Autoimmune processes can have various results, for example, slow destruction of a specific type of cells or tissue, stimulation of an organ into excessive growth, or interference in its function. Organs and tissues frequently affected include the endocrine gland, such as thyroid, pancreas, and adrenal glands; components of the blood, such as red blood cells; and the connective tissues, skin, muscles, and joints. Some autoimmune diseases fall between the two types. Patients may experience several organ-specific diseases at the same time. There is, however little overlap between the two ends of the spectrum.

In organ-specific disorders, the autoimmune process is directed mostly against one organ. Examples, with the organ affected, include Hashimoto's thyroiditis (thyroid gland), pernicious anemia (stomach), Addison's disease (adrenal glands), and insulin-dependent diabetes mellitus (pancreas) and pemphigus (skin).

In non-organ-specific disorders, autoimmune activity is widely spread throughout the body. Examples include rheumatoid arthritis, systemic lupus erythematosus (SLE or lupus), and dermatomyositis.

Are they Contagious?
No autoimmune disease has ever been shown to be contagious or "catching." Autoimmune diseases do not spread to other people like infections. They are not related to AIDS.

[LIGA girl]

This article is unfortunately 8 years old but may be a good one for family members .....
   
Autoimmunity and Your Family:
Researchers Looking at Genetics

by Sal Capo

One out of every five Americans has some kind of autoimmune-disease. Put another way, that's over 50 million people. Seventy-five percent of those 50 million are women (pemphigus is one of a few autoimmune diseases which treat the sexes equally). Autoimmune problems cause over 80 different diseases, including lupus, scleroderma,, rheumatoid arthritis, multiple sclerosis, autoimmune hepatitis, and of course, pemphigus. So far none of these illnesses can be cured. Noel Rose, M.D., Ph.D., Professor of Molecular Microbiology and Immunology and Pathology at Johns Hopkins University was quoted as saying: "This nation involves some $86 billion of its health care money in the treatment of autoimmune disease. We're talking about a major health problem in the United States. Autoimmune disease in the aggregate is right up there with cancer and heart disease as major disease problems in this country, both from the point of view of the number of people involved and the amount of our health care effort that goes into autoimmune disease."

"Despite their devastating human and economic toll, autoimmune diseases are among the least investigated, most difficult to diagnose, and physically and emotionally painful diseases that face Americans today," said Susan Wood, Ph.D., and newly appointed Acting Deputy Assistant U. S. Secretary for Women's Health, Department of Health and Human Services for the National Institutes of Health.

Stephen Katz, M.D., Ph.D., Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, stated: "Two of the hottest areas in medicine today are genetics and immunology. Advances in these areas will have a direct impact on our understanding of autoimmunity. With regard to genetics, the fact that autoimmune diseases can run in families indicates that the development of these diseases has a genetic basis." Several genetic studies released recently have identified genes that may play a role in autoimmune diseases.

Towards that end, one study by the Yale University School of Medicine and St. Mary's Hospital in Connecticut isolated an antibody which is a "common thread" in families. This antibody, known as the antiphospholipid antibody (APL), is an "auto-antibody" protein produced by the body to attack itself. When APL levels are too high disease occurs. If at least one family member suffers from an autoimmune disorder associated with high levels of APL, others did also.

Twenty-three family members, 87 blood relatives, 18 spouses and 37 controls were included in the Yale and St. Mary's study. Auto-antibodies were found in almost 60% of the blood relatives. Only one spouse showed the same. One third had APL antibodies, while another 37% had other autoantibodies. The control subjects showed no positive results. Eight relatives were found to have lupus or lupus-like syndrome, two had suffered premature stroke, and three had recurrent fetal loss.

Thomas Greco, M.D., assistant clinical professor of medicine at the Yale University School of Medicine said "While the study is relatively small, it is supported by other previous studies that suggest APL antibodies may actually be genetically transmitted from family member to family member, from generation to generation. More important, the APL antibody may be associated with one disease process in one family member and yet another disease process in another family member."

Independent research by Duke University scientists into the genetic patterns of 12 unrelated families with APL found the possibility that a single inherited genetic defect may be at fault. These findings support Dr. Greco's research, and in fact, Dr. Greco has begun a study with Duke University researchers to define the genetic defect which causes these diseases. This would put Dr. Greco on the evening news and be a major step in medicine for humankind.

Recent data presented by French researchers shows families with APL antibodies had diseases related to these proteins, as well as many other immune system troubles such as rheumatoid arthritis, systemic lupus erythematosus, and multiple sclerosis, among others.

Dr. Greco pointed out that while these proteins are seen in only about one or two percent of the population of patients nationwide, in affected families the rate may be as high as 50%.

"If an APL inheritance pattern can be firmly established in future studies, the good news is that we may be able to prevent premature stroke, heart attack, recurrent miscarriage and the other APL-associated diseases by performing simple and inexpensive tests and taking more thorough family histories," Dr. Greco predicted.

"It may be premature to say, but APL may end up being one of the common threads that ties together all of the seemingly unrelated 80 known autoimmune diseases," said Virginia Ladd, president of the American Autoimmune Related Diseases Association (AARDA). "If it turns out that APL is a common factor in autoimmune diseases, then the next step for researchers is to begin looking for an autoimmune gene."

Unlock one autoimmune disease and perhaps they all open. These are very exciting times in research labs. Many are involved and progress is made daily. Stay tuned.

June 1998

 

[LIGA girl]

homepage link for Australasian Blistering Diseases Foundation:

The pic of Linear iga in the About Blistering Diseases Page is of my back!!! Taken a few months ago ... not very nice either ....


http://www.blisters.org.au/BDHome.html

LG

[CalamityJane]

Hi Vicki:  Thank you for that link.  Your back looks painful and sore.  I didn't realize the blisters are so large.  But that poor person's foot, dreadful.

Guess you take the dubious accolade of being very rare. Do you have a photo album here on SC?

Jane

[LIGA girl]

Hi Jane

I suppose I should put some pics into an album here  - have just been too slack and/or shy - dont really want lots looking at me! I also have a great one on my fone of my L foot when it was really bad but cant download it - I may be able to borrow a lead that will let me do that and then  I will put up a few. I was actually surprised to see that pic of me when I looked at it today on the web - had forgotten I'd sent it to my derm!

Guess you take the dubious accolade of being very rare.

They all like looking at my lesions as some of them are the classic linear iga circle of blisters called a crown of jewels ... as one doc said to me "the last thing you need is to be interesting to doctors!"

I agree re that foot foto - a shocker!

[CalamityJane]

Hi V:

Some of these pics in the gallery, and on the web and shocking, for sure. The pic of that foot just made me cringe and shrivel up.

I made an album here, and I have a folder on my PC--everyhting has to be resized for the album here.  At the time I have the pics taken I wonder why the heck I'm doing it, but then many months later, I look at them and can see (and again feel) the difference.  I remember all the circumstances leading-up to their taking.  The sort of day, the time, who I was with, doing what, how it felt, etc.  Such has been the impact on the PPP upon me.

I feel you are very blessed with Bunnie, and her sage advice.  She's been there, and I really pray that it's never revisited for her.

Jane
PS  How the heck do you cope with your disease and the heat you are in.  If you read the PPP thread, you'll know my doc blames my PPP for my cellulitis (staph & strep).  That's one of the reasons I emailed you regarding the swimming. I realize that the foot is more prone to that sort of stuff in a pool/water, but any open skin at all seems to me to be an invitation (where I live, anyway).



Jane

[bunnie]

Hi Girls, Your back V looks like mine is now but at the shoulder level though, I don't think its quite as bad but near enough. I have an album Jane in the gallery, showing the disease and epidermal necritis which exascerbated the disease, due to a toxic reaction from a drug. Theres also a pic of my OOKP surgery on my left "eye".

How the heck do you cope with your disease and the heat you are in.

I always think of you V in the heat! As you know I have often said I don't know how you stand it! It really makes me worse in the summer , I dread it truly.
Couldn't you copy that picture of you and add it to the album I have created for the disease?
Just another point here...
Did you know that any photograph taken of you at the hospital, even with your permission belongs to you, and cannot be used publicly without your permission?
When the photos of my eye were made public, even though I could not be recognised my permission was still sought before He published the "paper". I was told this by two consultants, who look after me, and you can have copies although you may have to pay for them. They must seek your permission every time they use those photos.

[bunnie]

PS LG, Can you not scan the photo, save it to my pictures, and then using this re-size web-site, re-size it if necessary, save the now smaller version to my pictures, and then click on it on the additional options at the bottom here?
Nick taught me how to do this!
http://www.resize2mail.com/

[LIGA girl]

Hi ladies

 I have just been trying to post and unable to due to the large size of the photos i have ... i have the original of that one plus some others that are more recent. it is good to compare and I wil have a go at resizing them. It is getting late now tho and if i cant do it tonight, I will do it tomorrow.

The heat doesnt worry my skin too much ... it is mainly the excessive sweating I have now that makes it unpleasant. I do stick to my clothes a bit nore in the heat tho, but as you will see from my mroe recent photos when I post them, my back is healing pretty well and only a few of them 'stick' nowadays, as it were.

Apparently I gave permission to use that photo, George tells me, but my memory is so bad these days i dont remember - maybe i have blisters on the brain too ....

[LIGA girl]

I couldnt do it tonight so just emailed you both a photo and will have another go tomorrow - just warning you in case it comes thru and clogs up your inbox, you may have to go in and delete it from your server.

[bunnie]

 

but my memory is so bad these days i dont remember - maybe i have blisters on the brain too ....

Don't worry Lg, it happens to us all! I'm sure I'm in the first stages of Alzeimers
I went to the shop for some glue, remembered to get it , but can't remember what I want to stick with it!! It will come back to me!
PS I think we are using the wrong thread for this small talk!