Psychosocial Issues

“My symptoms are bizarre—they’re here today and gone tomorrow.”


“I can’t put a handle on my symptoms. I’ll have one today and a totally new one tomorrow.”


“No one seems to believe me. My family thinks it is all in my head and they want me to see a psychiatrist. I am beginning to wonder if it is all in my head.”


A definite diagnosis of lupus may take time. Patients may get upset about the lack of a confirmed diagnosis. They may not understand why the doctor(s) cannot figure out what exactly is going on. The main issue lies in the fact that symptoms change and may be confusing for both the patient and the doctor(s). The patient may become very emotional. The patient knows his/her own symptoms very well, but may begin to doubt what is going on due to the lack of diagnosis. He/she may begin to wonder if everything he/she has been experiencing was imagined because doctors, friends, and family members do not understand what he/she is going through. He/she may feel isolated, angry, or even fearful. This will only add to the amount of stress, which we established earlier, exacerbates the disease process.
It is important for health care providers to understand the disease process of lupus in order to be empathetic during this difficult time in order to reassure the patient and help him/her understand that what he/she is going through is real and it warrants serious attention. The health care providers also need to be educated to treat the patient as a person, not an illness. This can create a wonderful relationship of trust and respect between the patient and the provider.

The Pathophysiology and Etiology of Lupus

As I have stated before, lupus is an autoimmune disease. Let me review again what this means. Autoimmune means that the body’s immune system is functioning abnormally, causing the immune system to produce antibodies against its own tissues. Genetic, environment and hormonal factors might all play roles in the development of lupus. Much research is being done on these factors and how they relate to lupus.
The specific signs and symptoms of lupus are directly related to the effects of autoantibodies on the body. These autoantibodies attack self-cells and cause damage to different organs and tissues. Also leading to some signs and symptoms is the deposition of immune complexes, which is a combination of antigens and autoantibodies, and cell-mediated immune mechanisms. If pathophysiologists can identify the specific immune response steps and how they affect the signs and symptoms of lupus, new and improved treatments may be discovered.
Genetics seem to play a role in lupus. There is an increased prevalence of lupus between first and second degree relatives. According to the National Institute of Health, studies suggest that many genes contribute to susceptibility, not just one specific gene.
Environmental factors are believed to lead to increase lupus signs and symptoms or trigger lupus, such as sunlight, stress, chemical substances, toxic exposures, and infections agents. Exposure to ultraviolet (UV) rays of sunlight can cause skin rash and discoid lesions. The UVB light leads to cellular proteins to accumulate in large amounts near the surface of the skin, causing an inflammatory response. Stress can actually cause a flare, or increase in disease activity. No explanation exists to explain this, but research is being done. Certain medications and drugs can lead to lupus-like illnesses in individuals. The illness goes away once the drug is discontinued. If the relationship is discovered between the medications between the drugs and the illness, then perhaps more will be discovered about lupus in general. Toxic exposures, such as silica and mercury, can be associated with lupus. These substances can be associated with the formation of autoantibodies that lead to lupus formation. Viruses lead to disruption in immune function, which can cause an infection of B cells (cells that produce antibodies) causing them to produce autoantibodies. This can in turn lead to lupus signs and symptoms.
There are many aspects to the etiology of lupus. Hopefully future research will allow a better understanding of the exact cause and treatment of the disease so that those living with lupus will have a better outcome.

Informative Videos: We've come a long way, but there's still a long way to go.

Many patients diagnosed with Lupus go a very long time without being properly diagnosed. They go from one doctor or specialist to another. The best analogy is that they have all the specialists, or deck hands, and no one physician in charge, or a captain driving the boat. Luckily, some medical schools are training medical students to specifically recognize lupus and its symptoms so fewer patients go years without being diagnosed.




The Lupus Foundation of America, Inc., is working hard to make living with lupus easier and is working towards finding a cure.
The following is a message from Sandra C. Raymond, President and CEO of LFA:





More information to come soon!

-Callie

First Annual Howl at the Moon Bar Crawl was a Success!

Friday, October 21, 2011, the Lupus Foundation of America, Inc., sponsored a bar crawl at Five Points in Birmingham: The First Annual Howl at the Moon Bar Crawl. The event was a great success.
It was great to be able to provide information to passers-by on the street about what lupus is and the affects it has on patients diagnosed. Many people came up to our booth to tell us that they or family members are living with lupus. It was amazing to see that so many people in our area are living with this disease.
After the event ended at 10:00pm, door prizes were awarded. Everyone was really excited about the prizes they received, all of which were donated.

Hopefully, Howl at the Moon Bar Crawl will become an annual event.
More information to come soon!

2011 Howl at the Moon Bar Crawl

Please come out and support the Lupus Foundation of America, Inc.-Mid-South Chapter!

Event Information:
The Lupus Foundation of America, Mid-South Chapter invites you to join us for our first annual Howl at the Moon Football Bar Crawl in Five Points! Support your favorite football team while enjoying drink and food specials at participating bars and restaurants. There will also be door prizes!

With your help, we will increase awareness and support for those affected by Lupus across Birmingham, the state of Alabama, and Mid-South. Proceeds from the event will go towards the expansion of support groups and programs needed to enhance the quality of life for Lupus patients. The first 100 participants to register will receive a free Howl at the Moon Football Bar Crawl t-Shirt!

All participants must be 21 years or older. Please bring a valid I.D. to the event.

Location: Five Points South 10th Ave. 20th St. South

Tickets are $12 when bought via the site above. $15 at the door the night of the event.


Schedule:


2011 Bar Crawl Schedule & Specials


6:00-7:00
Registration
*All participants must come to the registration table before the bar crawl begins
(Will take place at the center of Five Points, in front of Original Pancake House and Starbucks)

7:00-8:00
Mellow Mushroom
Specials: $3.00 Garlic Bread with Cheese
$4.00 Bruschetta
$2.50 for 5 Oven Roasted Wings
$4.50 10 Oven Roasted Wings
$3.50 Sweet Water 420, Blue, IPA, and Georgia Brown
$2.00 Yuengling
25% off In-Stock Merchandise

AND

The J. Clyde
Special: One Free Appetizer Per Participant
(With Purchase of Food or Drink)

8:00-9:00
Fuego Cantina & Saloon
Special: $3.00 Pints of Dos Equis

AND

MetroPrime Steakhouse
Special:½ Off Glasses of Wine

AND

The H-Bar (located inside The Hotel Highland)
Special: $5.00 Martinis

9:00-10:00
Dave's Pub
Special: $3.00 Pints of Sprecher Oktoberfest

AND

Bacchus
Special: $5.00 Vodka and Killer Buzz

Please come out and have a great night with great people for a great cause!

Update: Lunch and Learn

The Fall quarter Lunch and Learn, "Coping with Lupus", was held yesterday, October 4, at 12:00 PM. Dr. Pamela Parker, M.D., of Birmingham's VA Medical Center, came to speak to the group about the many issues Lupus patients face on a daily basis. The large topics seemed to be handling stress and fatigue.
These topics are very important to cover, not only for patients, but also for their friends and family. Stress is very much related to the level of fatigue experienced. Dr. Parker discussed ways of dealing with fatigue in general. Her tips included things such as taking rests before it becomes necessary to alleviate exhaustion. Stressors vary depending on the individual, but everyone experiences stressors to an extent. A person living with Lupus has the very obvious stressor of health problems. They may also experience stress related to their health care providers, health insurance and monetary issues, and family issues related to misunderstandings of health implications. Stress is unavoidable, but there are many healthy methods to cope with stress. Learning how to say "No" and accepting one's limitations is a very important coping strategy for dealing with stress.
Overall, the Lunch and Learn was a great success! Check back to learn when the Winter quarter will be and the topic that will be covered.

Lunch And Learn-Coping With Lupus

The Lupus Foundation of America, Mid-South Chapter

Invites You

To Join Us for Our "Brown Bag" Lunch and Learn Series

Featured Topic: "Coping with Lupus"


Featured Speaker: Dr. Pamela Parker, M.D.
Clinical Psychiatrist at Birmingham's VA Medical Center, Clinical Assistant Professor at UAB

When: Tuesday, October 4th 12:00-1:00 PM

Where: UAB Highlands, Media Room
1201 11th Avenue South
Birmingham, Alabama 35205

Bring your lunch and we'll bring the dessert!
Dessert will be provided by
Ashley Mac's Cafe/Catering/Gourmet To-Go

Lunch and Learns are informational health programs designed to bring lupus health information and hope and healing to our community.
Lunch and Learn programs are free of charge and open to the public, but registration is required.
Please contact Rebecca Smith at
rebecca.smith@lupusmidsouth.org to register.