Meet Jenny!

Jenny Thorn Palter is the editor of Lupus Now magazine and Publications Director for the LFA, and the newest contributor to the LFA blog. In addition to her pieces in the magazine, you may have seen her previous contributions to the blog during the International Lupus Congress in Vancouver last year. Jenny has been working at the LFA for 13 years. She was diagnosed with lupus in 1993.

Her blog column, “Jenny’s Notebook,” will cover a variety of topics, like living with lupus, behind-the-scene at Lupus Now, inspirational people with lupus, and much, much more. Look for her first post in the next few days, about her recent trip to the Pediatric Rheumatology Symposium sponsored by the American College of Rheumatology, where the focus was on lupus in children and adolescents.

Join me in welcoming Jenny to the LFA blog!

Jenny's Updates from 9th International Lupus Congress - Day 3

Today I attended sessions on children and adolescents with lupus. The presentations focused on bone health, puberty and sexual development, and quality of life measurements. One slide reminded us that children are not small adults, and that medications are not created or designed or tested in clinical trials with children; neither is the bone scan machine known as DEXA able to properly measure bone mass density in young people. And let's not forget that young people have different communication skills than adults; nowhere is this more important than in adherence to the medical regimens their doctors set forth. To paraphrase former U.S. Surgeon General C. Everett Koop, "medicine cannot help a person who does not take the medicine."

The emotional health of their young patients is also of great importance to physicians, as well as to parents. Being able to measure how young people feel about themselves and their disease can help them have successful adult lives with lupus. It was very heartwarming to see the dedication of pediatric rheumatologists - and equally disheartening to learn that there are so few to go around - not just in North America, but also throughout the world.

A lovely reception concluded the busy day, and allowed researchers, physicians, people with lupus and their loved ones, staff from patient advocacy groups, and friends to gather together in one of the convention center halls. Awards were presented to the Congress organizers, to the representatives of all the lupus groups, and to LFA staff member, Mary Crimmings. We were even treated to a snappy rendition of “Fever” by one of the lupus delegates from New Zealand - now that's an International Lupus Congress worth remembering!

Jenny's Updates from 9th International Lupus Congress - Day 2

Even though 5:30 came way too soon, I was so glad I attended the Walk around the Bay this morning. The sunbeams sparkling on the water, joggers jogging and dogs playing, and all of us in our white t-shirts… Just wait '’til you see the fun photos! Sculptures in the park (crouching red men and scattered white sacks), houseboats that looked like cottages and yachts that looked like —well, mansions; all in all, it was a great way to start the day.

And then: the plunge into the day's meeting.

Ask any lupus doc: they'’ll tell you that people living with lupus are just about the most determined people they know: determined to learn all they can about their disease, determined not to let lupus define who they are. Well, the same goes for the lupus researchers and physicians around the world. On behalf of their patients, they are determined to beat lupus!

Here are some of the things I learned in today'’s scientific sessions.

Genes markers will one day reveal which person will respond best to which medication. Biomarkers will be able to predict risk for heart disease and thinning bones and blood clots. Improved designs of clinical trials are making possible the first-ever medication specifically for lupus.

Meanwhile, many important lupus studies are underway: antiphospholipid antibodies (Canada), lung involvement (USA), kidney transplants (Spain), memory loss (South Korea), mood and anxiety disorders (Brazil), cognitive function (Chile), the influence of aging (Egypt), lupus nephritis (Iran), cutaneous lupus (Romania), to name just a few, —and of special importance to those with lupus: the LFA presentation on how lupus affects employment, family relationships, and overall well-being.

We are very grateful to the men and women who spend their lives unraveling this complex disease. Stay tuned!

Jenny's Updates from 9th International Lupus Congress - Day 1

Jenny Palter, editor of Lupus Now Magazine, will be blogging about her experiences at the 9th International Lupus Congress in Vancouver, Canada.

My day in Vancouver at the International Lupus Congress began with registration - 1,200 registrants are expected! Most are lupus researchers and physicians, but also 200 folks who live with lupus (and caregivers, because sometimes it takes a team to help a person live with lupus, doesn't it?!). There are delegates from lupus groups in Canada, Denmark, France, Indonesia, the Republic of Mauritius, the Philippines, New Zealand, Norway, Spain, Sweden, the United Kingdom, and the USA. Wow!

The opening session of the Lupus Patient Congress included a panel discussion, moderated by LFA Medical Director Joan Merrill, MD, about drugs in development for lupus: belimumab (Benlysta) from Human Genome Sciences; micophenolate mofetil (CellCept) from Vifor; atacicept from EMD Serono; sifalimumab from MedImmune; abatacept from Bristol-Myers Squibb; and epratuzumab from UCB. The presentations were followed by a Q&A period. Audience members asked excellent questions, such as: "What is causing B cells to become overactive?" "Why isn't neuropsychiatric lupus included in the studies?" "Is belimumab steroid-sparing?" and "When will a treatment be developed to treat fatigue?"

At the Welcome Reception we were treated to a performance by members of the Salish Nation of Native Peoples, who have lived in the Vancouver area for 10,000 years. A highlight of the evening was when a traditional hand-carved Talking Stick was presented to Congress Chair John Esdaille. The carvings of the eagle, for insight, the raven, for communication, and the wolf, for lupus, together described the purpose of the Lupus Congress.

The perfect ending to the first day was seeing the darkening sky above the Bay streaked with pink as I made my way back to my hotel room. First, this blog entry. Then, to bed - the Walk for Lupus is at 6 a.m., and it's a full day after that!