Have you Heard the News?

Recently the Lupus Foundation of America, Connecticut Chapter Awardwas awarded the Bright Idea Leadership Award for our documentary “40 Years, 40 lives.” The documentary was released earlier this year, and follows the lives of people who are living with lupus in the state of Connecticut.

Lupus Foundation of America, Connecticut Chapter, was awarded this at the recent annual meeting held in Washington DC. This meeting is for all of the LFA chapters to come together and talk about where they have been and what the future will bring for their individual chapter.

If you have not seen the “40 Years, 40 Lives” documentary, click the link below to check it out!



Five Themes of Lupus that can Help Doctor’s with Patient Care

Many people who have to deal with lupus often find themselves having the same experiences that others are having with the disease. The autoimmune disease often interferes with people’s lifestyles and causes them to not be able to live their life to full potential.

Recently, Doctor Allison Tong of the University of Sydney in Australia and her associates put the responses of about 1,400 people from 46 different studies into five concepts. These concepts and themes can help doctors deal with patient care and help them to improve the level of care and treatment outcomes.

The following five reoccurring themes were found in Dr. Tong’s study:

1. restricted lifestyle

2. disrupted identity

3. societal stigma and indifference

4. gaining resilience

5. treatment adherence

Doctor’s can use these five themes to develop and expand patient care to make it more centralized.

Each of the themes that Dr. Tong discovered has similar common experiences or perspectives of people living with lupus. People with the disease experiencing a restricted lifestyle had an interference with their mood and daily activities. This was caused by: pervasive pain, debilitating fatigue, mental disorientation, disruptive symptoms that develop over time, and having to postpone pregnancy due to anxiety over the risks of complications. People who experienced the disrupted identity factor had uncertainty and an emotional burden of dealing with lupus. The factors of this theme are: challenges of obtaining a clear diagnosis, uncertainty of their future and progressiveness of the disease, feelings of being a burden to family and friends, hopelessness, heightened self-consciousness due to appearance changes, fear of rejection, and guilt or belief that illness is punishment for an unhealthy lifestyle. People who experienced the societal stigma and indifference theme developed this when others trivialized the illness and when they were socially ostracized. They also experienced this theme when they were overprotected or intruded on by family members.

Two themes showed positive affects. Gaining resilience was obtained when patients accepted their disease and developed positive attitudes when dealing with lupus. They accepted lupus and coped with their new reality when they were diagnosed. Emotional and physical support given by family, friend, and doctors also helped them to accept the disease and live a normal life. Patients felt more in control and empowered when they were actively engaged in their lupus treatment. Being involved with lupus is an integral part of dealing with the disease because it allows you to see how other deal with the disease and gives a mutual understanding of others experiences with lupus. Treatment adherence was also a positive theme. People’s health improved when they believed that their medication was helping their disease and was having a positive impact on their health. Getting along with doctors and trusting them also helped treatment adherence. Staying on medications was a factor when patients did not think they were working, or went off of them for financial reasons.

Overall, People’s education, psychosocial (offering social and emotional support), and self-care programs helped to improve mental resilience of adults with lupus. It did this by developing better methods of coping with the disease. These factors will help people with lupus achieve better treatment and obtain the best quality of life.



New “Treat to Target” Plan Being Studied as New Treatment Method for Lupus

Lupus is a disease of many faces that requires closely monitored medical guidance. Throughout a lupus patient’s lifetime, they should feel comfortable with their medical care. Doctors and patients should come up with a concrete plan on how to approach treating symptoms and problems that arise with lupus. To maintain lupus, it does not hurt a patient to work as a team with their doctors in order to figure out a plan of action against this cruel disease.

A treatment approach called Treat to Target is a good way to go about dealing with problems that arise with lupus. This treatment approach has been used in other diseases to help patients live the best that they can. Patients who have diseases such as rheumatoid arthritis and diabetes have benefited from using this plan of attack.

The Details

This treatment strategy is when a doctor and patient come up with a strategic plan to achieve goals with their medical care. They do this by developing goals, methods of how to reach their goals, and deadlines on when they have to reach them by. If their strategy is not working, it is changed to a more suitable treatment plan. The goal of Treat to Target is to improve the quality of life for lupus patients so they can live their life to their fullest potential.

What are specialists doing to make sure this treatment strategy is effective?

Since this treatment strategy has worked previously in other diseases, twelve lupus experts set out to get the facts straight and study if this plan actually worked or not. Beginning in 2012, a group of international specialists got together to study Treat to Target. The group of specialists consisted of doctors in these fields: Rheumatology (muscles and joints), Nephrology (Kidney problems), Dermatology (skin), Clinical Immunology (Immune Disorders), Internal Medicine (adult diagnosis and prevention of diseases), and a lupus patient representative.

The group leader and professor of Clinical Therapy Research at the Karolinska Institute in Stockholm Sweden, Ronald Van Vollenhoven, described what exactly Treat to Target does. “The Treat to Target concept has actually several elements. It has the target, which you decide you want to achieve; how you are going to measure the targets, how you are going to determine that you did in fact achieved it or not; and then the implementation of one or more therapeutic steps that hopefully are going to make it possible to achieve that target.”

The group of specialists developed four principles and a set of 11 recommendations for this strategy to work with the disease of lupus. Most of the recommendations and principals deal with remission, improving the quality of life with lupus, and preventing damage to part of the body.

Dr. Vollenhoven described what the group of specialists came up with in order to improve quality of life. “That’s the whole idea of treating the patient [making them better], but I do think it makes a difference if you, first of all, identify specific targets, so you’re very clear about what you want to achieve. You also identify the correct way of measuring it. You develop a timeline for this, so something can be achieved in a relatively short period of time and other things taken over time. Finally, you also make the agreement with the patient and also with yourself [as the physician], that if you do not achieve this target at the right point in time, then you will do something else.”

What’s the next step for Treat to Target?

The next step for Treat to Target is to have controlled clinical trials to see if this treatment method can be as successful as it has been with other disease such as rheumatoid arthritis and diabetes. Whether this treatment plan will end up being a home run or strike out for lupus patients, the specialists involved in this study are hopeful and confident that Treat to Target will be a hit.

Read the full journal article on Treat to Target here.  






Moving Forward in Clinical Trial of Adult Stem Cells

Doctor Gary Gilkson, a professor of Medicine and Microbiology and Immunology at the Medical University of South Carolina has been awarded a $255,067 planning grant from the National Institute of Allergy and Infectious Disease (NIAID).

Gilkson was given this grant in order to prepare for a multi-center, controlled trial for lupus patients. This trial will be involved with mesenchymal stem cells to treat adult patients who are suffering from moderate to severely active lupus. Mesenchymal stem cells are “multipotent stromal cells that can differentiate into a variety of cell types.”

In a previous study, Gilkson received a $100,000 grant from the Lupus Foundation of America Peer Review Program. This grant conducted preliminary studies of research to get rid of problems with clinical trials of adult stem cells in lupus. Data from this study was able to help Gilkson and his team of researchers advance to the next step of this long process of applying to the National Institute of Allergy and Infections Disease.

The long-term goal of this study is to determine whether or not mesenchymal stem cells are safe and effective for the treatment of lupus. The current grant will allow Gilkson’s team to get approval from the United States Food and Drug Administration (FDA) to conduct uncontrolled studies at six medical centers around the United States. Fifty lupus patients and matched controls receiving standard care will be apart of this study. The start date is slated for sometime in 2016.

Other studies have shown mouse models and uncontrolled trials in human lupus patients. These have suggested the infusion of mesenchymal stem cells from healthy adults may be safe enough to use in treatment of lupus and may have few side effects.

Click here to view a video explaining how adult stem cells in the human immune system may help to manage lupus symptoms.

About Dr. Gary Gilkson

 Dr. Gary Gilkson went to college and received his undergraduate degree from Baylor University. He then went onto the University of Texas Southwestern Medical School and received his medical degree. After spending four years in the Air Force, Gilkson completed a Rheumatology fellowship at Duke University Medical Center before moving to the Medical University of South Carolina in 1996.

The Link Between Lupus and Antimalarial Medications

Many physicians agree that anti-malarial medications should be used in lupus patient’s long term if they can handle taking the medication daily. Lupus patients can use antimalarial drugs such as hydroxychloroquine (Plaquenil), chloroquine (Aralen) or quinacrine (Atabrine) to ease lupus symptoms and aid them for the rest of their lives if able to. According to the John Hopkins Lupus Center website, the antimalarial medications listed above can help lupus patients to live longer and can also help to reduce lupus flares up to 50 percent. Other benefits of these medications are: improvement in joint and muscle pain, reduction in skin rashes, prevention of pericarditis (inflammation of lining of heart) and pleuritis (lung inflammation). Malaria medications may also prevent lupus from spreading into the kidneys and nervous system.

How on earth are lupus and malaria even in the same category? 

You might be asking yourself how these drugs are used for malaria AND also help symptoms of lupus. The answer is, these drugs have a range of effect on people and what they do for prevention and treatment of malaria does not mean that they do the same thing for people with lupus.

Malaria is a horrible life-threatening disease that is caused by a parasite. These parasites are found in tropical regions. Although about 90 percent of malaria cases go unreported, the most common areas where people have gotten the parasite are South East Asia, Uganda, and Kenya. The parasite is spread through the human bloodstream when a mosquito bites a person. The parasite goes directly from the saliva of the mosquito into the human bloodstream. These parasites attack Red Blood Cells and can actually be seen crawling in the cells under a microscope. For the parasite to survive in the human body, they have to break down hemoglobin in a red blood cell. This results in toxic by-products that need to be processed and contained by the malaria parasite. The parasite does this by using a tiny digestive like pouch in its body to store toxic crystals. This contains the toxic by-product within the parasite and keeps it from hurting itself. Chloroquine stops this from happening and binds to the toxic product to break down and disrupt the malaria invader.

Just like the malaria parasite, specialized, acid filled, proteins are stored in digestive pouches in human cells. Antimalarials go into lysomes of cells and decrease acid levels in them that are required to work best. Antimalarials hinder hyperactive immune cells and help to regulate them.

No matter if a cell is a human or malarial cell, they both have an intricate chemical process that forms, breaks up, and digests substances that enter the human bloodstream.CruelMystery

Hydroxychloroquine is a breakdown product of chloroquine. The breakdown of this medicine is helpful when given the initial parent drug. Hydroxychloroquine affects the immune system by interfering with internal messaging of immune cells. It does this by inhibiting important proteins that recognize danger signals, like infectious invaders or lupus systems.

Proteins called Toll- Like Receptors simulate and make a lot of type one interferon, which is a protein. Interferon is helpful when the body is trying to fight of viruses. By inhibiting production of an interferon, a balance can be made to prevent flares and viruses.

Hydroxychloroquine is a weak Toll-Like Receptor. Stronger Receptors are currently being studied with regards to lupus.

So what’s the downside these three antimalarial medications?

These medications can cause a bevy of side effects that make them difficult to stand year after year. Hydroxychloroquine is the most common antimalarial drug prescribed for lupus. This drug has side effects such as wheezing, unexplained fever, skin rash, blurred vision, and dizziness. The next antimalarial drug most commonly prescribed is chloroquine. This drug has side effects such as twitching, loss of balance, and muscle weakness. Out of all three drugs listed in the above paragraph, this drug has the most dangerous side effects and needs to be monitored closely when it is being taken. The least common antimalarial drug prescribed for lupus is quinacrine, and is not available in tablet form anymore. If you end up being prescribed this, your doctor will direct you to a compounding pharmacist. This type of pharmacist makes and sells drugs that are not mass-produced by a drug company. These types of pharmacies can make special drug formulas that are especially tailored for patients.


Alternative Medicine and Therapies that may be Beneficial to Lupus

Living with a cruel disease like lupus can often involve treatment methods that do not provide complete relief of symptoms caused by the disease. This can sometimes lead to anger, frustration, and anguish among people living with the disease. Maintaining a healthy and thriving lifestyle can be a lot of work when living with lupus, and often people find themselves looking for other ways to help relieve symptoms. Alternative medicines, which are medical treatments that are not regarded as orthodox by people in the medical profession, can help people with lupus manage their disease. Some alternative medicine and therapies are acupuncture, herbal supplements, massage, hydrotherapy, yoga and meditation. In the following paragraphs we will discuss each of these alternative forms of treatment and talk about their benefits to someone who is living with lupus. Remember, it is important to discuss these treatments with your doctor before trying any of them!


Photo Courtesy: www. hemanklerehab.com

Hydrotherapy: Uses water to revitalize, maintain, and restore health in individuals. Treatments include saunas, steambaths, footbaths, and application of cold and hot water compress.

External Hydrotherapy: This type of hydrotherapy involves immersing someone in water or is the application of hot or cold water to the body. Hot water hydrotherapy can be beneficial to lupus patients because it relaxes the muscles and causes sweating. This is used to treat arthritis, rheumatism, poor circulation, and sore muscles.

Benefits of Hydrotherapy: Hydrotherapy has many benefits that are not limited to but include: loosening tight muscles, encouraging relaxation, hydrating skin cells, boosting the immune system, helping with stomach problems, headaches, joint and muscle pain, nerve problems, and stress.

Yoga: Many of you have probably heard about exercising by using yoga, and it’s plethora of benefits to the human body. Yoga is the spiritual, mental and physical practice that aims to help rejuvenate the body and steer it away from negativity. Yoga uses breathing, meditation, and exercise to improve a persons overall health.

Benefits of Yoga: Yoga can help the body cope with lupus in many ways. It can provide physical and emotional stability, as well as help to relieve stress. It also can help with pain relief by relieving tights muscles and sore joints.

Click here to read about one woman’s personal battle with lupus and how she used yoga to help relieve symptoms.

Meditation: Meditation is used in yoga, but can also be a helpful practice to relieve lupus related stress on its own. Meditation helps to train the mind to have positive thoughts and leave negativity on the side. It has a calming and peaceful affect. There are many types of meditation including:

Guided Meditation: Imagining mental images of places or situations that you find relaxing.

Mantra Meditation: Process of silently repeating a thought, word or phrase to prevent distracting and stressful thoughts.

Benefits of Meditation: Meditation can help many people who are stressed by the effects of an illness. It can help one to gain new perspectives on a stressful situation, and also can help to build skills to manage stress.

Massage: Massage therapy can be beneficial in many ways. Technically it is the pressing, rubbing, or manipulation of skin, tendons and ligaments.

Benefits of massage therapy: Massage therapy has many benefits including but not limited to: reliving stress, joint and muscle pain. It helps with maintenance of chronic pain as well as tissue inflammation on skin. It also can help increase mobility due to how it helps muscles and joints.

Acupuncture: Accupunture is an ancient Chinese form of medicine that stimulates certain points of the skin using thin needles. Chinese Medicine explains accupunture as a technique that is used to “balance flow of energy or life force.” The process of accupunture may seem scary, but rarely causes any pain. During the process, thin needles will be inserted into skin and manipulated by twirling. Mostly, the needles are kept in place for at least 20 minutes, while you are instructed to relax.

Benefits: Acupuncture has many benefits, including some that can be helpful towards patients with lupus. Acupuncture can help people with chronic pain such as muscle and joint aches. It also helps sooth stomach indigestion and helps migraines.

Herbal Supplements: Many people use herbal supplements and find them helpful to rid themselves of certain annoying things that pop up during their lifetime. Some herbs can be helpful, but be mindful that some can actually be harmful to you. It is important to make sure that you check with your doctor before taking a herbal supplement, as some may interact with your medications or be unhealthy for you. Below are some herbal supplements that may help with lupus symptoms.

Thundergood Vine: This Chinese herb may help ease pain that comes with arthritis and also may help soothe the immune system.

Green Tea: Green tea can help with many issues, but for people with lupus, the ingredient polyphenol may be beneficial. It is said to have an anti-inflammatory effect on the human body.

 Turmeric: The chemical curcumin is ground from the turmeric shrub and may help to lessen inflammation.

In the paragraphs above, only a few alternative medicine techniques have been discussed. There are many types of alternative medicines out there, but it is important to make sure you research the type thoroughly before trying it. Also, remember to check with your doctor before trying anything new!




Come Join us for the 10th Annual Eric Pearson Memorial Golf Tournament!

Come out and enjoy a beautiful day of golf at our 10th annual Eric Pearson Memorial Golf Tournament! The proceeds of this event will benefit the Eric Pearson Foundation. The Foundation’s goal is to raise awareness of childhood lupus and support pediatric treatment, education, and research for children who are suffering from this cruel disease. The Eric Pearson Foundation strives to support children living in Connecticut who suffer from lupus.

Event Details:golf-club-auctions

Date: September 22, 2014

Time: 10:30 AM

Location: Golf Club at Oxford Greens, 99 Country Club Drive,
Oxford, CT, 06478

Cost: $225 per player ($900 per foursome)

Applications are due by September 18, 2014. If you register by the end of today (August 1), you can save $100 dollars off the price of a foursome ($800 per foursome).

About Eric Pearson: Eric Pearson was diagnosed with lupus at the age of five. His fight with lupus was an ongoing battle until he lost his life in 2005, two weeks after his 16 birthday. The last five years of his life were especially heartbreaking and difficult because the disease was attacking his kidneys and nervous system. At one point, Pearson was paralyzed and on a ventilator for breathing. This year marks the tenth anniversary of Eric Pearson’s death. Pearson’s family has been dedicated to supporting and fighting this cruel mystery. Click the link below to come help support their cause.