Kendra Isola's blog

October Newsletter

cure4lupus — Sun, 01 Nov 2009 23:18:55 UT

View our October 2009 Newsletter: http://cure4lupus.org/newsletters/newsletter1009.htm

Topics include: Vaccines & Lupus, A Better Doctor's Visit, Lupus Fundraisers, Cure4Lupus.org Moved, WeAreLupus.org, ButYouDontLookSick.com, Lupus Research News, What's Hot, Featured Product: 2009 Lupus Awareness Ornament, New and Updated pages.

Subscribe to the newsletter here: http://cure4lupus.org/phplist/?p=subscribe&id=6

August Newsletter

cure4lupus — Thu, 20 Aug 2009 01:55:10 UT

Read our August newsletter: http://cure4lupus.org/newsletters/newsletter809.htm

Topics Include:
Des Moines, IA Fundraiser,
Vitamin D & Lupus,
Donate to Our Walk Team,
BenLysta,
Featured Profile,
Featured Lupus Website,
Lupus Research News,
What's Hot,
Featured Product,
New and Updated Pages

Sign-up to get our newsletter by email: http://cure4lupus.org/phplist/?p=subscribe&id=6

Big News in Lupus Research

cure4lupus — Sat, 25 Jul 2009 01:32:53 UT

This was a great week for Lupus research. Human Genome Sciences, Inc. and GlaxoSmithKline PLC announced that BENLYSTA™ (belimumab, formerly LymphoStat-B®) met the primary endpoint in a 52 week study. This is the first of two pivotal Phase 3 trials in patients with Systemic Lupus Erythematosus. This was a placebo-controlled study in which BENLYSTA™ showed significant improvement of disease activity when compared to placebo with adverse reaction rates comparable to placebo. The patients taking BENLYSTA™ were also able to reduce their steroid need.

BENLYSTA™ works by inhibiting BLyS. BLyS is a protein required for B-lymphocytes to mature into plasma B cells. Plasma B cells are white blood cells that produce antibodies and in Lupus they produce autoantibodies that attack the body's own tissues. People with Lupus often have elevated BLyS levels.

The results of the second, longer trial will be announced this fall. If this trial is also successful and BENLYSTA™ gets FDA approval it will be the first new treatment for Lupus in over 50 years and the very first drug developed specifically for Lupus since it's discovery over a century ago.

While a big step in the treatment of Lupus, this is only the beginning. This is not a cure for Lupus. Lupus is a complex, individualized disease that requires complex, individualized treatments. Much more research and more treatments are needed. BENLYSTA™'s success shows that there is hope and will hopefully help get some momentum going that will eventually lead to a cure!

July Newsletter

cure4lupus — Tue, 21 Jul 2009 01:14:44 UT

Read our July Newsletter: http://cure4lupus.org/newsletters/newsletter709.htm

Topics Include: Pampered Chef, Lupus in the Media, Donate to Our Walk Team, Product Changes, Orange Ribbons, HuHot, Lupus Research News, Stem Cell Research News, New & Updated Pages

Receive our Newsletter by email: http://cure4lupus.org/phplist/?p=subscribe&id=5

Support Lupus through Pampered Chef

cure4lupus — Sat, 11 Jul 2009 00:05:47 UT

From July 10-31 you can support Lupus awareness and research by purchasing products from The Pampered Chef. All of our hosting gifts and a portion of every sale made by purchasing from our fundraising page: http://www.pamperedchef.biz/camerongowdy?page=host-search-results&showId=2146135 will be donated to Lupus awareness and research.

June Newsletter

cure4lupus — Thu, 18 Jun 2009 23:10:50 UT

View our June Newsletter here: http://cure4lupus.org/newsletters/newsletter609.htm

Topics Include:

Get Involved Locally,
Be On Our Front Page,
Walk For Lupus,
Lupus Research News,
Stem Cell Research News,
New & Updated Pages

Get our newsletter by email: http://cure4lupus.org/phplist/?p=subscribe&id=6

May Newsletter

cure4lupus — Wed, 20 May 2009 01:18:48 UT

Our May Newsletter is out: http://cure4lupus.org/newsletters/newsletter509.htm

Topics Include:
New Blogs
Twitter
Join Our Walk Team
Zazzle
Financial Assistance Available
Free Lupus Awareness Downloads
Lupus Research News
Stem Cell Research News
New & Updated Pages

To get our newsletter in your email register here: http://cure4lupus.org/phplist/?p=subscribe&id=5

March Newsletter

cure4lupus — Tue, 10 Mar 2009 22:02:31 UT

http://cure4lupus.org/newsletters/newsletter309.htm
Topics include: Lupus Events & Support Groups, Dancing at the River's Edge, Lupus & Stem Cells, Link to Us, WeAre Lupus.org, FaceBook Group, Lupus Research News, Stem Cell Research News, New & Updated Pages.
Receive our newsletter by email: http://cure4lupus.org/phplist/?p=subscribe&id=5

February Newsletter

cure4lupus — Thu, 12 Feb 2009 04:40:41 UT

http://cure4lupus.org/newsletters/newsletter209.htm

Topics include:

Medication Warnings
Be Part of our Memory Wall
Advocacy Day from Home
New & Updated Pages
Lupus Research News
Stem Cell Research News

Join our maili..ng list at http://cure4lupus.org/phplist/?p=subscribe&id=5.

January Newsletter

cure4lupus — Sun, 18 Jan 2009 23:31:14 UT

http://cure4lupus.org/newsletters/newsletter109.htm

Topics Include: All New Lupus Designs, Advocacy Day 2009, 2009 Calendars, Lupus Research News, Stem Cell Research News, Your Lupus Story, New & Updated pages.

Sign up to recieve the newsletter by email here: http://cure4lupus.org/phplist/?p=subscribe&id=5

October Newsletter

cure4lupus — Tue, 28 Oct 2008 02:53:29 UT

Check out our October Newsletter at: http://cure4lupus.org/newsletters/newsletter1008.htm

Features Include:
Get Out the Vote
Fundraiser for Lupus Groups
2008 Ornaments
REACH Amendments
Lupus Research News
Stem Cell Research News
New & Updated Pages

Support me as I "walk"

cure4lupus — Fri, 15 Aug 2008 21:49:56 UT

Although I am not physically able to walk in the second annual Iowa Walk for Lupus Now, I am still very passionate about the mission of the Lupus Foundation of America, so I am participating as a virtual walker and committee member.

This organization works to fund Lupus research, support Lupus patients, and raise Lupus awareness. This year’s walk will take place on September 13th at Gray's Lake in Des Moines, IA. I would like to invite you to help support us in fighting Lupus by sponsoring me with a donation. Click the link below to visit my page:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=272038&lis=0&kntae272038=FA91F2962504479BB04BBD0F4718C712&supId=185223504

Kendra Isola
webmaster@cure4lupus.org

May Newsletter

cure4lupus — Tue, 13 May 2008 03:26:17 UT

http://cure4lupus.org/newsletters/newsletter508.htm

Topics Include:

Lupus Awareness Month
Memsaic Wall
Celebrities & Lupus
Our Website Colors
Lupus Research News
Stem Cell Research News
New & Updated Pages

Lupus & Tattoos

cure4lupus — Wed, 23 Apr 2008 06:53:18 UT

One of the most common questions we receive is inquiring whether it is "ok" for people with Lupus to get a tattoo.

The Lupus Foundation of America has this to say about the subject:

"There are no specific problems that have been associated with tattoos in lupus patients. Keep in mind the small risk of infection with hepatitis B and C. Occasionally lupus patients have been known to have a reaction to the tattoo dye but this is very rare. Remember, if you are on immunosuppressive medication, this may increase the chances of infection and slow healing of the tattoo area. As with other procedures, it is best done when you are in remission or a welled controlled mild disease state. Consult with your physician prior to getting your tattoo."

Also, if you are on blood thinners you may not be able to sit for long sessions. The longer someone is being tattooed, the more the skin is irritated and the more they bleed, pushing the pigment back out in spots. This does not apply to small tattoos (under 1 hour) or to black and gray tattoos.

Kendra has thought about getting a tattoo for many years but was afraid of the pain and healing time. For her 30th birthday in January 2008 she decided to go for it. She wanted to get a tattoo that represented her passion and work for the Lupus Awareness Cause so she chose a purple butterfly carrying a purple ribbon. To add dimension a second color was added to the butterfly. A blueish teal was chosen in honor of Kendra's sister who has Scleroderma.

Kendra having Lupus and Fibromyalgia was nervous about the pain, however found the entire process to be only slightly painful, perhaps comparable to a shallow sting. Kendra is also on immunosuppressives and was very diligent about aftercare. The tattoo healed up perfectly with no infection or complication within 1 week. Since getting the tattoo, we have gotten several compliments and even a few very flattering copies. Email us pictures of your Lupus tattoo to webmaster@cure4lupus.org. View Kendra's tattoo here: http://cure4lupus.org/information/lupus_&_tattoos.htm

April Newsletter

cure4lupus — Sun, 20 Apr 2008 10:39:36 UT

View April's Newsletter here: http://cure4lupus.org/newsletters/newsletter408.htm

World Lupus Day

Invite Us to Your Event

New Products

New & Updated Pages

Lupus Reasearch News

Stem Cell Research News

November Newsletter

cure4lupus — Sat, 10 Nov 2007 08:40:10 UT

Read our latest newsletter here:
http://cure4lupus.org/newsletters/newsletter1107.htm

Topics Include:

Holiday Lupus Ornaments

Media Campaign Update

Our Political Efforts

New and Upated Pages

Products for a Cure

Lupus Reasearch News

Stem Cell Research News

Help us reach our goal

cure4lupus — Thu, 11 Oct 2007 11:55:34 UT

We are down to less than 48 hours left before our Lupus Walk and things are getting very exciting! Please help us reach our fundraising goal by making a donation today. Even if you can only give a dollar or two, every little bit helps! Almost all of the money will be going to Lupus research. The rest will go to educate Lupus patients and to raise awareness. Below is the link to donate:

http://lupusia.walk.kintera.org/faf/search/searchTeamPart.asp?ievent=243852&lis=0&kntae243852=F248E62E72A94964AAE8FB9E933052CF&team=2043187

Join Our Team

cure4lupus — Fri, 10 Aug 2007 07:54:30 UT

We are participating in the first annual Iowa Walk for Lupus Now because our family & countless other families have been deeply affected by Lupus. Please support us in raising money to support the Lupus Foundation of America, Iowa Chapter.

Their mission is to improve the diagnosis & treatment of Lupus, support those affected by the disease, increase awareness among health professionals & the public, & find the cause & a cure.

We are asking all of our supporters to support us with a donation to sponsor us or you can even join our team and walk virtually!

To make a donation to our team you can Visit our Team Page and click on General Team Donation at the top.

To Join our Team and Help us Raise Money for Lupus awareness, and research, Visit our Team Page and click on Join our Team at the top.
Our Team page is located at: http://lupusia.walk.kintera.org/faf/search/searchTeamPart.asp?ievent=243852&lis=1&kntae243852=B3194AAB268A43BE944B0B9B56BEFB2D&team=2043187

Kendra Isola
Cure4Lupus.org Webmaster
Webmaster@Cure4Lupus.org

New this week...(ending 6/19)

cure4lupus — Thu, 21 Jun 2007 00:26:23 UT

This week's Media Campaign pick was Newsweek Magazine

Lupus Poetry & Humor - Finding Lesa…, A Little Peace of Mind.

Lupus in the News - Buy the July issue of Ebony Magazine to show your support for the article on pg. 142 titled "Living with Lupus"

Lupus Products - New: Survivor Photo Frame, Foam Butterfly Photo Frame, Lupus Awareness Jr. Tank Tops:15 designs, Photo Holder, Lupus Awareness Mousepads:14 designs, Lupus Awareness Office Decor, Cure Lupus Canister. Updated: Checkbook Cover, Credit Card Holder. Also, we are doing more EBay auctions.

Lupus Research News:
http://cure4lupus.org/news/07/news_061707.htm

Stem Cell Research News:
http://cure4lupus.org/news/sc07/scnews_061807.htm
http://cure4lupus.org/news/sc07/scnews_061507.htm
http://cure4lupus.org/news/sc07/scnews_061407_4.htm
http://cure4lupus.org/news/sc07/scnews_061407_3.htm
http://cure4lupus.org/news/sc07/scnews_061407_2.htm
http://cure4lupus.org/news/sc07/scnews_061407.htm
http://cure4lupus.org/news/sc07/scnews_061207_2.htm
http://cure4lupus.org/news/sc07/scnews_061207.htm

New this week...(ending 6/12)

cure4lupus — Wed, 13 Jun 2007 04:41:47 UT

New this week...(ending 5/22)

cure4lupus — Tue, 22 May 2007 23:05:35 UT

This week's Media Campaign pick was Anderson Cooper 360

Glossary of Lupus Terms - -itis, arteritis, peritoneal cavity, tinnitus.

Lupus Stories - Jeani's Story

Lupus Videos - ALR Faces of Lupus Video Added.

Celebrities & Lupus

Lupus Symptoms - Peripheral Neuropathy, Gastrointestinal Tract, Arteritis of the Large Intestine, Ascites, Chronic Diarrhea, Dysphagia, Hepatomegaly, Nausea & Vomiting, Autoimmune Inner Ear Disease (AIED), and Splenomegaly.

Lupus in the News

SLE Genetic Studies - NIEHS Study

Online Studies - National Databank for Rheumatic Diseases

Lupus Products - New: Lupus Awareness Car Decorations Page, Lupus Awareness Home Decorations Page, Purple Awareness Ribbon Products Page, 12 Lupus Awareness Journals.

Events Calendar - Long Island Walks w/ Us, June 10; Denver Walks w/ Us, Sept. 29; Dallas Walks w/ Us, Sept. 29; New York City Walks w/ Us, Oct. 13; Washington D.C. Walks w/ Us, Nov. 3; San Francisco Walks w/ Us, Nov. 3; Houston Walks w/ Us, Nov. 17.

Lupus Research News:
http://cure4lupus.org/news/07/news_lribiomarker.htm

Stem Cell Research News:
http://cure4lupus.org/news/sc07/scnews_051607.htm
http://cure4lupus.org/news/sc07/scnews_051607_2.htm
http://cure4lupus.org/news/sc07/scnews_051607_3.htm
http://cure4lupus.org/news/sc07/scnews_051707.htm
http://cure4lupus.org/news/sc07/scnews_051707_2.htm
http://cure4lupus.org/news/sc07/scnews_051807.htm
http://cure4lupus.org/news/sc07/scnews_051807_2.htm
http://cure4lupus.org/news/sc07/scnews_051907.htm
http://cure4lupus.org/news/sc07/scnews_051907_2.htm
http://cure4lupus.org/news/sc07/scnews_052107.htm
http://cure4lupus.org/news/sc07/scnews_052107_2.htm

New this week...(ending 5/14)

cure4lupus — Wed, 16 May 2007 05:57:36 UT

This week's Media Campaign pick was Dateline

Lupus Poetry & Humor - Now, & I am not this body.

Lupus Stories - Lisa's Story, & updated Kendra's Story (updated)

Lupus Products - New: Purple Ribbon Guardian Angel Pin, Purple Ribbon Survivor Bracelet, Purple Ribbon Heart Locket, Purple Ribbon Flag, Purple Ribbon Garden Flag, Purple Ribbon Watch. Price Reduced - Purple Antenna Topper, Purple Butterfly Italian Charm, Purple Ribbon Italian Charm, Purple Ribbon Charm Post Earrings, Purple Ribbon Charm Wire Earrings.

Stem Cell Research News:
http://cure4lupus.org/news/sc07/scnews_050807.htm
http://cure4lupus.org/news/sc07/scnews_050807_2.htm
http://cure4lupus.org/news/sc07/scnews_050807_3.htm
http://cure4lupus.org/news/sc07/scnews_050807_4.htm
http://cure4lupus.org/news/sc07/scnews_050807_5.htm
http://cure4lupus.org/news/sc07/scnews_050907.htm
http://cure4lupus.org/news/sc07/scnews_051007.htm
http://cure4lupus.org/news/sc07/scnews_051107.htm
http://cure4lupus.org/news/sc07/scnews_051207.htm
http://cure4lupus.org/news/sc07/scnews_051407.htm

New this week...(ending 5/8)

cure4lupus — Wed, 09 May 2007 06:14:39 UT

This week's Media Campaign pick was The Oprah Winfrey Show, also check out the update on: The Martha Stewart Show

Why go to Lupus Support Groups?

Lupus FAQ - Break the Cycle

Political Candidates - added listing of US House members co-sponsoring the Lupus REACH Amendments of 2007, also added contact info to all candidates, and Stem Cell Importance

Get Involved - Online Studies, Study for couples w/ Lupus.

Lupus Products - New: Fibromyalgia Sucks Bumper Sticker, Someone I Love has Fibromyalgia Bumper Sticker , What's Your Excuse Fibromyalgia Bumper Sticker , Fibromyalgia Sucks Key Chain , Someone I Love has Fibromyalgia Key Chain , What's Your Excuse Fibromyalgia Key Chain , Awareness Ribbon Punch, Awareness Ribbon Stamp, Awareness Ribbon Embellishment, Survivor Embellishment , Oval Survivor Embellishment.

Events Calendar - May 9th – LFA Live Chat – Social Security, June 6th – LFA Live Chat – Emotions of dealing w/ Lupus, October 13th – Des Moines, IA LFA Walk.

Lupus Research News:
http://cure4lupus.org/news/07/news_040407.htm

Stem Cell Research News:
http://cure4lupus.org/news/sc07/scnews_050307.htm
http://cure4lupus.org/news/sc07/scnews_050307_2.htm
http://cure4lupus.org/news/sc07/scnews_050307_3.htm
http://cure4lupus.org/news/sc07/scnews_050307_4.htm
http://cure4lupus.org/news/sc07/scnews_050507.htm
http://cure4lupus.org/news/sc07/scnews_050507_2.htm
http://cure4lupus.org/news/sc07/scnews_050607.htm

What is Lupus?

cure4lupus — Thu, 29 Mar 2007 04:23:56 UT

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.