Lupus Awareness Media Campaign

We are announcing a Lupus Awareness Media Campaign.  We are starting a campaign to try to get some media attention for Lupus Awareness.  Every week we will be picking a Television show, newspaper, magazine or radio show asking them to do stories/segments on Lupus.  We will post our letters and the contact information for the media outlet we have chosen for that week.  We ask all of you to write to these outlets as well. 

The more letters they get, the more serious they will take us and the more likely they are to do the stories.  Many of us have written these emails before, but if we coordinate so that they get hundreds of letters in the same week, maybe they will pay attention!  You can write one letter and save it on your computer and send the same one to each media outlet.  Or, you can do what we will be doing and have a basic letter that you can customize to each show, etc. 

New picks will be posted every Friday.  To see the picks or have them emailed to you weekly, visit http://cure4lupus.org/media_campaign.htm. 

Universal Health Care

I received an email from the John Edwards Campaign today asking me to email my local paper my support of his Universal Health Care Plan.  I was all too anxious to do this.  I think Universal Health Care is FAR overdue in this country.  I just thought I would share what I wrote and give you the link in case you might want to write a letter of your own.

 

 

I’m writing to share why I strongly support John Edwards’ plan for universal health care.  I am 29 years old and I have suffered from Systemic Lupus Erythematosus since the age of 13.  My parents were unable to supply me with health insurance as a teenager so I went undiagnosed.  Lupus is a disease that has periods of flare and remission.  As a young adult these flares, and the excruciating joint pain and fatigue that came with them, made a steady work pattern and obtaining health insurance for myself impossible. 

After struggling to pay thousands of dollars in medical bills I was finally diagnosed at age 26.  At this time I was also told that the Lupus had been attacking my kidneys for the past 10 years and that they were permanently scarred.  I was told that there is no treatment, the damage has already been done, and that I would need dialysis and a kidney transplant at some point.

 

None of this was necessary.  If I had been properly insured and treated from the age of 13 my kidneys would not be failing, I would not be taking 50 pills every day, I would not be disabled, I would be contributing to Social Security rather than drawing from it, and my family would not have had to gone through years of enormous emotional and financial strain.  This has literally taken years, perhaps decades off of my life.  Universal Health Care will save lives! 

Universal Health Care is far over due in this country!  It doesn’t matter what the cost, in the long run it will save us countless lives, and dollars.  It is just the right thing to do!

 

Here is the address if you want to write your own letter: http://johnedwards.com/action/letters-to-the-editor/health-care/

 

Kendra

SLE Genetic Studies

SLE Genetic Studies

There are two studies that are being conducted right now that Kendra has participated in and we thought some of you with SLE may be interested in.  You can participate in both studies no matter where you live in the US for sure, not sure about out of the country.  All you have to do is fill out some paperwork and they send you a kit to take to your local lab and have some blood drawn.  Both studies are totally free to participate in, they pay for all lab work and postage.

The first one is conducted by the University of Minnesota.  They are studying the genetics of SLE.  They are trying to identify and understand the genetic factors that contribute to SLE.  For more info about the study visit: http://www.lupusstudy.org/index.php to enroll in the study visit: https://www.lupusstudy.org/contact/contact_request.php .

The second is the The Lupus Multiplex Registry and Repository (LMRR).  This is a long term research project sponsored by NIAMS a branch of the National Institues of Health (NIH).  The information collected is used to:

Identify the genes involved in the development of lupus,

Determine these genes’ role(s) in disease activity,

Study various aspects of the disease (such as autoantibodies),

Develop better treatment for patients who suffer from this serious illness &

One day, find a cure or method of disease prevention.

This study pays a small fee for your time, I think it was $30.  To read more about this research project visit: http://lupus.omrf.org/ to fill out the online interview visit: https://lupus.omrf.org/lara/ .

I hope some of you will consider participation in these studies.  The more we learn about what causes Lupus the faster we can find a cure!  Click here to see more about Lupus clinical trials.

PS I spoke with one of the study coordinators and she is interested in talking w/ people in the UK about the second study. Anyone in the UK interested can email her at: Amanda Crosbie [Amanda-Crosbie@omrf.ouhsc.edu]

Stem Cell Breakthrough

We learned this week that scientists have recently developed a method that allows them to take an embryo at an early stage of development, extract a single cell and coax it into forming an embryonic stem cell line that can be used in stem cell research.  Since only one cell is removed from the embryo, it retains it’s full potential for development. 

While this is very new, and not without it’s drawbacks, this development could make it very difficult to oppose embryonic stem cell research in the future and could open the door for federal funding.

Here are some articles with more information:

http://health.msn.com/healthnews/articlepage.aspx?cp-documentid=100143549&GT1=8404

http://www.msnbc.msn.com/id/14481692/

Or click here for Stem Cell Information

Stem Cell Information

Stem cell research is an area of great political debate in this country right now.  Most Americans however do not understand what it is, or what the debate is about.  There is great hope that stem cell research could someday yield a cure for many diseases including Lupus.  This page will help you understand the basics of stem cells and give you resources to learn more about them so that you can make informed decisions.

Stem cells are primal cells that all multi-cellular organisms have.  They have the unique ability to renew themselves through cell division.  Stem cells are undifferentiated cells meaning that they can become a wide variety of specialized (differentiated) cells such as red blood cells, insulin secreting pancreas cells, lung cells, brain cells, etc.

Scientists hope to be able to direct these cells into becoming specific specialized cells in order to understand, treat and cure a wide variety of diseases and conditions including Lupus, Parkinson’s Disease, spinal cord injuries, Alzheimer’s Disease, stroke, burns, heart disease, Diabetes, Osteo-Arthritis, Rheumatoid Arthritis, some Cancers, Muscular Dystrophy, and more.

There are two different kinds of stem cells, embryonic stem cells and adult stem cells.  Embryonic stem cells are cells derived from embryos that were fertilized in an in-vitro fertilization clinic and then donated for research once they were no longer needed.  Adult stem cells are undifferentiated cells that are found among differentiated cells in a tissue or organ. 

Embryonic stem cells are the ones that have generated the ethical questions that are at the center of the debate.  Extracting the stem cells from an embryo destroys the embryo.  It is the opinion of some people that this is taking a human life.  It is important to note however that these embryos would be destroyed if not donated to research. 

While research with adult stem cells can and has yielded benefits, researchers believe that adult stem cells are not as durable, healthy or versatile as embryonic stem cells.  They have more abnormalities due to exposure to environmental factors such as toxins.  They also do not seem to have the ability to multiply the way embryonic stem cells can.  Adult stem cells also can not be manipulated into specialized cells as well as embryonic stem cells can be, therefore limiting how they can be used to treat and cure diseases.

If you would like to learn more about stem cell research, below are some links to some very informative web pages dealing with this topic.  After you have become educated about this issue, please consider writing to your legislators asking them to support and fund stem cell research, at the least with adult stem cells.  You can also vote for politicians who will support and fund this life saving research.  This is the most promising research in decades for not only Lupus but all the diseases mentioned above as well as others, hundreds of millions of lives could be saved and improved!

Mayo Clinic – Stem Cells: Sorting through the hype and the hope

National Institute of Health – Stem Cell Information

Stem Cell Research Foundation

Stem Cells Fight Lupus Video Click Here to View

Text on this page may be copied and reposted, but please post a link to our website (cure4lupus.org) with it.

Kendra’s Story

My name is Kendra and I suffer from life-threatening SLE.  I am 28 years old and a co-founder of Cure4Lupus.org.  Lupus is a disease that affects everyone very differently.  Some people have different symptoms than others, and some people have life-threatening disease while others just have some sore joints every once in a while.  I thought I would share what Lupus has been like for me.

I first started having symptoms at age 13.  I would complain of joint pains, headaches, and stomach problems.  I was treated for tendonitis, stress headaches, ulcers, scoliosis, and other things.  By the time I was 17 it became apparent that I had something more going on than a string of unconnected illnesses.

I was not insured at that time so my doctor visits were sporadic at best.  I had a great-grandmother that had Rheumatoid Arthritis (RA), so after doing some research, RA was my best guess.  I was experiencing a lot of joint pain at that time, even to the point of being crippling at times.  My “bad days” were more like bad 3 days.  I was having fatigue and weakness but didn’t realize what was causing it, and like most of my symptoms I just assumed it was normal for a long time.

At 18 I got insurance for myself and began seeing a doctor.  He told me that it looked more like Lupus than RA, but that more work needed to be done to find out for sure.  At that time I was going through many flares and remissions.  At times I would be pretty well fine and other times I would have crippling joint pain and fatigue. 

I lost my insurance and wasn’t able to continue treatment.  I treated myself during this time with massive quantities of Aleve and rest.  I had many, many periods where I was unable to work, socialize, etc. for weeks or sometimes months at a time.  This continued really until I was 24.

Around 24 I again got insurance for a short time and began seeing doctors again.  At that time I was diagnosed with Premature Ovarian Failure secondary to the Lupus.  Basically that means I went through menopause and will never be able to have children of my own.  With the hormone changes I gained about 20 lbs at that time.  My flares got longer and closer together until I was counting the good days because it was easier than counting the bad ones.  I had to quit working and filed for disability.

Even though I had no insurance my illness was too severe to not go to doctors so I went as much as I could afford to pay for, and I got as much medicine as I could afford to pay for.  OMG, I could tell you some stories about some heartless doctors and some of the shotty care I got because I didn’t have insurance, but that is another story.

I finally got the Lupus diagnosis for sure in early 2004, making me officially un-insurable.  At that time they discovered that there was severe damage to my kidneys, and I was admitted to the hospital for a kidney biopsy.  The results came back as Class VI Lupus Nephritis and I was told that meant my kidneys were scarred the most they could be and there was nothing to treat it with, the damage had already been done over the years I wasn’t seeing doctors.  I was told that my kidneys would fail and I would need dialysis and a transplant.

During that time I also started the parade of medicine.  I have tried so many drugs I couldn’t possibly remember them all.  Some of them I have been allergic to causing all sorts of nasty things, I remember those drugs.  I have had drug toxicity due to my kidneys inability to clear them from my body.  Many just plain didn’t work.  The best part though has been the side effects of the ones that actually worked. 

One of those meds was Prednisone, a steroid.  After starting Prednisone, I promptly gained another 30lbs, my face turned into a balloon, my ankles became flotation devices and my skin lost collagen so I got stretch marks all over my body.  Another fun medication I started on was a chemotherapy drug called CellCept.  This one cost $400 a month and for that I got the pleasure of headaches, thinning hair and reduced resistance to infection.  When I was having a particularly bad flare, I would get a bump in Prednisone and another 10lbs.  Here is a before and after picture of what Prednisone has done to my appearance in just a couple of years.

After moving back to Iowa where I am on a program for the un-insurable, I have seen some of the best doctors in the world at the University of Iowa.  I am getting excellent care, unfortunately that doesn’t mean I feel better, as a matter of fact I feel worse.  They have doubled my dose of chemo, tripling the side effects.  Because of my decreased resistance to disease, I got a case of Shingles for the record books I think.  If you haven’t had the pleasure, let me just tell you it is a little slice of hell!  I have endured a lot of pain in my day but Shingles takes the cake by far!  I also got a complication of Shingles known as PHN which is basically code for the pain hangs around for months or even years after the rash is gone.

Currently, December 2006, I am taking pills 5 times a day, over 50 pills per day in all, not counting any as needed meds.  I go to doctor appointments on average 2-3 times a week.  I have manageable pain (and by that I mean Vicodin is my friend), random joint inflammation and pain, pain from the Fibro, severe insomnia, depression, anxiety, pancreatitis from the Prednisone, Hyperthyroidism, Sleep Apnea, daily headaches caused by Idiopathic Intracranial Hypertension that is threatening my eyesight, and I am sure I am forgetting things.  I don’t recognize myself in the mirror anymore.  I spend most of the days I am not at doctors’ visits resting, and watching TV.  I have had to stop trying to lose the 70lbs I have gained over the last 3 years, it is impossible on the Prednisone dose I am on right now. 

Now that I have talked about all the bad things it is only fair to mention the amazing gifts I have gotten from having this disease.  I know that sounds strange but, I am honestly thankful for the patience it has taught me.  It has made me live in the moment and to make the most of everyday.  Lupus has also given me an amazing amount of compassion and empathy for others!  And, I am most grateful for the strength I have built, I know I can make it through anything!

Lupus Symbols

Purple - Purple represents courage and endurance things all lupus patients must have. 

Butterfly – Traditionally the butterfly represents freedom, transformation and recovery.  Also, one of the more common symptoms of Lupus is called a butterfly rash.  It is a red rash across the nose and cheeks that resembles a butterfly.  That is why the butterfly has become the symbol of hope for Lupus patients.

Wolf – The word lupus in Latin means wolf.  This word was used for this disease due to the rash that many patients get a rash across thier face that was said to resemble the markings on wolves’ faces.

Ribbon w/ a knot tied in it – This symbol represents the complexity and uncertainty of the disease.

What is Lupus?

Lupus is a very serious, chronic (life-long), inflammatory, autoimmune disease.  Autoimmune is a class of diseases that share one characteristic, they all involve the immune system turning against the body.  Our immune systems are designed to fight off foreign invaders like bacteria and viruses.  With autoimmune diseases like Lupus, the immune system sees normal healthy cells as foreign invaders and attacks them.  This causes the body to respond naturally with inflammation to expel the invader.  This inflammation is what causes the pain, and discomfort as well as sometimes permanent damage to the cells. 

There are several different kinds of Lupus:

Systemic Lupus Erythematosus (SLE) is the form of the disease most people are referring to when they say Lupus.  It is the most common.  The word systemic means the disease can affect the whole body including the skin, joints, tendons, blood vessels, muscles, organs, etc.  Each Lupus patient is different some have a more mild form of SLE whole others may have severe, life-threatening disease.

Life Threatening Lupus is defined as SLE affecting one or more vital organ such as the heart, lungs, kidneys, or liver.

Discoid Lupus Erythematosus is a chronic skin disorder in which a red, raised rash appears on the face, scalp or elsewhere.  The rash may last for days or even years and it also may recur.  The raised areas may become thick and scaly and may cause scarring.

Subacute Cutaneous Lupus Erythematosus is skin lesions on parts of the body that are exposed to the sun.  These lesions do not cause scarring.

Drug-induced Lupus is a kind of Lupus that is cause by medications.  The symptoms are similar to SLE and usually go away after the medication is discontinued.

Lupus in Overlap w/ other Connective Tissue Diseases is Lupus with one of the following other diseases also: Rheumatoid Arthritis, Polymyositis-Dermatomyositis, Scleroderma, Sjogren’s Syndrome, various forms of Vasculitis.

Neonatal Lupus is a form of Lupus found in newborn babies born to mothers with Lupus, Sjogren’s, or no disease at all.  It is very important that women with Lupus be closely monitored by a physician during pregnancy.

There is no cure for Lupus at this time.  We also do not know what causes Lupus.  Genetics, drugs, hormones, environmental factors (UV light, viruses), etc. are all possible contributing factors to SLE.  People with a family member that has an autoimmune disease are far more likely to develop SLE than the general population.  Women are also far more likely to develop the disease than men so hormonal factors are being studied.

We here at Cure4Lupus.org believe that we need a cure for this disease, not just more toxic treatments.  We support only the research that is aimed directly at finding either the cause which could lead to a cure, or for a cure itself, not just more toxic drugs.