In the News: Chinese Herb May Ease Rheumatoid Arthritis

Vasculitis is an inflammatory condition. While few people will outright recommend alternative medicines, patients already know that relief can be found through solutions outside of the mainstream medical treatments. There was even a special session on this topic at the 2008 Vasculitis Foundation Patient Symposium.

So, it is with an open mind that I offer this news to you. Consider any potential new treatment wisely, and follow one bit of mainstream advice that never gets old:

Do not take any medicine
or treatment without
consulting with your doctor(s).

WebMDHealth Newletter : Chinese Herb May Ease Rheumatoid Arthritis
"Chinese Herb May Ease Rheumatoid Arthritis
‘Thunder God Vine’ May Work as Natural Treatment for Rheumatoid Arthritis Symptoms

By Jennifer Warner
WebMD Medical News
Reviewed by Louise Chang, MD

Aug. 17, 2009 -- A Chinese herbal remedy may help ease symptoms in people with rheumatoid arthritis .

A new study shows that the Chinese herbal remedy Tripterygium wilfordii Hook F (TwHF), also known as “lei gong teng” or "thunder god vine," helped decrease joint tenderness and pain in a small group of people treated with the medicinal plant."

[Note: I cannot post the entire article due to WebMD copyright. However, you can read the rest of the story here:]
http://www.webmdhealth.com/nl/nlv.aspx?id=gbfcn7Ijg9Q=&s=11294


You can find links to resources about natural and alternative treatments on the Education page of the NMVasculitis web site here:
http://www.nmvasculitis.org/Home/support/education#TOC-Natural-Alternative-and-Complementa

For example, a quick search at The National Center for Complementary and Alternative Medicine (NCCAM) leads me to more information here:

Thunder God Vine [NCCAM Herbs at a Glance]
http://nccam.nih.gov/health/tgvine/

Hope this does not offer false hope for pain relief. Discuss your options with your doctor before trying any treatment that might conflict with your medications.

Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org

About Swine Flu -- Booga Booga!

There is much buzz going around about the swine flu these days. Mostly it is a big fat scary question mark for most people. Should I get vaccinated? What happens if I get it? Will it kill me?

First my personal disclaimer...

I am NOT an expert. However, I also have these same concerns, so in keeping my ear to the ground I have a discovered a couple of answers I can share with you. Just my perspective and I am sure others may differ, so make up your own minds. You are responsible for you.

Here goes...

What is swine flu?

In case you did not know, there are other variations of H1N1 in the normal annual vaccine, but this new one so called "swine flu" aka "2009 H1N1" aka "" is genetically unique enough to be unaffected by the regular seasonal flu vaccine and so requires special attention.

H1N1 (Swine Flu)
"H1N1 flu is a new influenza virus causing illness in people. It has two genes from flu viruses that normally circulate in pigs in Europe and Asia, plus avian genes and human genes. Scientists call this a “quadruple reassortant” virus."
http://www.flu.gov/individualfamily/about/h1n1/index.html#what

[Just so you know, I am not making these links clickable on purpose. To learn more about Swine Flu - Booga Booga (use your imagination to insert dramatic sounds of thunder and lightning crashes here), then you can visit the very clickable link to flu.gov I will give you at the end of this article. I will quote heavily from that site, but the same information is also available from other sources.]

How widespread is the flu pandemic?

The outbreak of H1N1 is very widespread. It is affecting people all over the country. No matter who you are, by now, you probably know people who have it, or who have had it in their family. You can look at the map, but it is pretty dull, since the entire thing is the same color. That means it is everywhere. This is what a pandemic looks like:

CDC - Seasonal Influenza (Flu) - Weekly US Map: Influenza Summary Update
http://www.cdc.gov/flu/weekly/usmap.htm

What happens if I get the swine flu?

What happens if you get swine flu it is you get the flu symptoms. I mean you have had the flu before, right? If you have never had the flu, then perhaps you should write an article about healthy living. See the symptoms:

Symptoms of Flu

Seasonal Flu - All types of flu can cause:

* Fever
* Coughing and/or sore throat
* Runny or stuffy nose
* Headaches and/or body aches
* Chills
* Fatigue

H1N1 Flu - Same as seasonal flu, but symptoms may be more severe.

* Fever
* Coughing and/or sore throat
* Runny or stuffy nose
* Headaches and/or body aches
* Chills
* Fatigue

In addition to the above symptoms, a number of H1N1 flu cases reported:

* Vomiting
* Diarrhea"
http://www.flu.gov/individualfamily/about/symptoms/index.html

What the doctors and reading widely tells me is this swine flu is generally about twice as bad as the regular flu, and about twice as many people as usual will get it. So, if last year two people in ten got the flu, then this year perhaps four people in ten will get sick with the flu, and so on. But, I also understand that not all of those will necessarily get the swine flu, so the using just the numbers to evaluate risk gets complicated.

So, if you normally get off easy, you might still, and if you do get sick, you may notice it more.

If you normally get your ass kicked by the flu, then be prepared for perhaps an especially bad time of it. But, considering the odds, most people are still going to end up okay even if they do get it. The ones who need to be extra careful are those in the high risk groups. Such as say... any population of patients with other conditions who must take medications that suppress their natural immune system.

Going on to describe what to expect is more difficult, since I have not had the swine flu. Those I know who have had it and recuperated, said it was a nasty flu... but nothing particular stood out from other flus they had in the past.

I read an article about a group of infected US Air Force cadets that helps shed light on the timeline for this particular flu and also suggests that Tamiflu may not help shorten the duration of this swine flu:

July 4 swine flu outbreak shows pattern of virus(Print Version)
"July 4 swine flu outbreak shows pattern of virus

URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_90860.html (*this news item will not be available after 01/18/2010)

Reuters Health Information Logo
Tuesday, October 20, 2009

People practice coughing into their sleeves as a way to try to control the spread of the H1N1 swine flu virus, during a meeting for workers at the Maryland Department of Health and Mental Hygiene in Baltimore, September 3, 2009. REUTERS/Jonathan Ernst (UNITED STATES HEALTH)By Maggie Fox, Health and Science Editor

WASHINGTON (Reuters) - More than 100 new cadets at the U.S. Air Force Academy got infected with swine flu at a July 4 barbecue and fireworks display but quick isolation measures got it under control within two weeks, researchers reported on Tuesday.

The outbreak provided a unique opportunity to study the virus closely and Dr. Catherine Takacs Witkop and colleagues say they discovered some surprising things. Among them:

* Nearly a quarter, or 24 percent, of patients still had virus in their noses seven days after getting sick, including 19 percent who had been well for at least 24 hours

* Tamiflu, the drug used to treat influenza, did not help any of the previously healthy young men and women get better any quicker.

* Most cadets were sick for five days or longer

* Eleven percent of the cadets became infected."
http://www.nlm.nih.gov/medlineplus/print/news/fullstory_90860.html

That particular outbreak offered a wealth of information to medical researchers who are studying the way this flu spreads, and it also sheds light for those of us who just want to know what to expect.

As it happens, the percentage of cadets infected happens to parallel pretty closely the percentage of kids at my daughters school who have become ill. I wonder if that is merely a coincidence or if it makes the numbers more meaningful as a predictor?


Who should get the vaccine?

As a vasculitis patient, you should always get your annual regular flu vaccine, and now you should also get the 2009 H1N1 "swine flu" vaccine.

People with Health Conditions
"People with certain health conditions such as asthma, arthritis or lupus, diabetes, cancer, HIV/AIDS, and heart or kidney disease may face special medical challenges during flu season."
http://www.flu.gov/individualfamily/healthconditions/index.html

Don't feel sad that they did not mention vasculitis by name. To fix that, wear your vasculitis T-Shirt more often, pass out Vasculitis Foundation (VF) brochures on clinic days (call the VF to get some or ask me), and start making awareness a priority in your every day life. E.g. Try striking up at least one conversation about vasculitis with a new person every day. Wearing VF items is one way to get noticed and inspire questions.

In the meantime, just know that your condition qualifies you for the dubious honor of fitting into the category of "a person at high risk for complications from flu symptoms."

Look at your most recent blood workup. What is your T cell count? Here is a quote from a medical article concerning flu vaccines. I quote from a section specifically about "Immunocompromised Persons."

Prevention and Control of Seasonal Influenza with Vaccines
http://www.cdc.gov/mmwr/preview/mmwrhtml/rr58e0724a1.htm

"Immunocompromised Persons

TIV produces adequate antibody concentrations against influenza among vaccinated HIV-infected persons who have minimal AIDS-related symptoms and normal or near-normal CD4+ T-lymphocyte cell counts (136--138). Among persons who have advanced HIV disease and low CD4+ T-lymphocyte cell counts, TIV might not induce protective antibody titers (138,139); a second dose of vaccine does not improve the immune response in these persons (139,140). A randomized, placebo-controlled trial determined that TIV was highly effective in preventing symptomatic, laboratory-confirmed influenza virus infection among HIV-infected persons with a mean of 400 CD4+ T-lymphocyte cells/mm3; however, a limited number of persons with CD4+ T-lymphocyte cell counts of <200>140). A nonrandomized study of HIV-infected persons determined that influenza vaccination was most effective among persons with >100 CD4+ cells and among those with <30,000>53).

On the basis of certain limited studies, immunogenicity for persons with solid organ transplants varies according to transplant type. Among persons with kidney or heart transplants, the proportion who developed seroprotective antibody concentrations was similar or slightly reduced compared with healthy persons (141--143). However, a study among persons with liver transplants indicated reduced immunologic responses to influenza vaccination (144--146), especially if vaccination occurred within the 4 months after the transplant procedure (144)."

Looking at the science is like reading Greek to most of us, but the short and sweet of it is the flu vaccine can help you if you are immune compromised or immune suppressed, which is essentially the same thing. Keep in mind research that benefits understanding of cancer and HIV sometimes directly benefits understanding of vasculitis as well. So vote yes to medical research grants when you get the chance. Especially for autoimmune related conditions.

The article I quoted also seems to suggest that if your disease is asymptomatic, then your immune system may be a bit stronger than when you have active symptoms, or what vasculitis patients sometimes refer to as a flare. That part is just my interpretation, but I think it makes sense from what I have observed on Meaghan's good days and bad days.

I think this information may also imply that lower doses of chemotherapy and prednisone suppresses your immune system less, so lower doses means you should be better off in terms of fighting off the flu. Common sense is not dead. I wonder if it applies that way?

Yeah, vasculitis patients in the target risk group (ages 8-18) should definitely take extra precautions, and they should be talking to their various doctors about obtaining the special H1N1 vaccine. But that does not mean everyone you know needs it.

Patients over 60 may be at less risk from swine flu than the regular flu:

"CDC laboratory studies have shown that about one-third of adults older than 60 may have antibodies against this virus. It is unknown how much protection may be afforded against H1N1 flu by an existing antibody."
http://www.flu.gov/individualfamily/about/h1n1/index.html

In fact, to whip this bugs butt, the more healthy people that get it and beat it, the better off we will all be. I spoke to one emergency room nurse who said that if he did not have an immune suppressed patient in his family, he would get everyone together for one big swine flu party, so they could all hug and kiss and trade boogers to get the swine flu, then camp out and recover together. That way they could grow the antibodies and get on with their lives .

Musing: Would it not be lovely to know a number for your own baseline immune system, and then also know the actual percentage associated with the immune compromise?

Imagine this statement by a vasculitis patient:

"Say, my healthy immune factor is normally an 85, but I have 23% suppression from the current dosage of methotrexate and prednisone, so my immune system is operating at about 65.55 right now. I am up 1.5 points from last month, so I feel great about that."

Obviously we do not get to know our personal "immune factor," and there is no sure way to calculate the percentage of immune suppression. However, if you are in a high risk group for complications from regular flu, then yes, you should seek out both the inactivated regular season flu vaccine and the inactivated H1N1 flu vaccine when it becomes available.

Activated? Inactivated? What kind of flu vaccine should I get?

For both regular flu vaccine and swine flu vaccine, be sure to get the shot of the dead virus in the arm, not the squirt of live virus in the nose.

CDC - Seasonal Influenza (Flu) - Key Facts About Seasonal Flu Vaccine
"There are two types of vaccines:

* The "flu shot" — an inactivated vaccine (containing killed virus) that is given with a needle, usually in the arm. The flu shot is approved for use in people older than 6 months, including healthy people and people with chronic medical conditions.

* The nasal-spray flu vaccine — a vaccine made with live, weakened flu viruses that do not cause the flu (sometimes called LAIV for "live attenuated influenza vaccine" or FluMist®). LAIV (FluMist®) is approved for use in healthy* people 2-49 years of age who are not pregnant."
http://www.cdc.gov/flu/protect/keyfacts.htm

Caregivers and others living in the same household with an immune suppressed patient should also avoid the live vaccine as it can be contagious to your loved one. You do not want to actually get the disease, even in a mild form, when you are around an immune suppressed patient.

What about caregivers? Should they get the H1N1 vaccine?

First off, if you did not get your regular season flu vaccine, go do that ASAP.

Opinions differ about whether caregivers should get all the vaccinations or not. Even if you want to get the H1N1 flu vaccine, you may not be allowed to get the vaccine unless you are also in the high risk group for some other reason.

The logic is not necessarily the same in the mind of public health care professionals as it is in your mind. You think, "Hey, I need protection so I do not pass it on to my loved one." They think, "We only have x doses of this stuff, we need to give it first to people who really really need it."

Depending on your situation, you must decide who to ask, and how aggressively to press the issue. However, do not be surprised when they may tell you that you do not qualify now and you should come back later. I think the answer you get will depend entirely upon who you ask, and how you ask the question. Finger to nose as I give you the heads up to be very nice about it when you do ask.

As a caregiver, I think about the scenario where I get the swine flu and am therefore required to isolate myself from my daughter for the five to seven days it will take my body to beat it off. Then another 24 hours after that, just to make sure I am not contagious. Can I afford to get the flu? When can anyone afford to get the flu?

I cannot answer for others, but I will ask about the vaccine. Then, I am not going to go ape crazy if there are not enough doses and the powers that be tell me to wait. I had my seasonal flu shot, and am drinking fluids like crazy to proactively stay healthy. Water is life.

I am not in a high risk group for flu complications. If I catch H1N1, I will send my immune suppressed daughter packing off to her grandparents for a week and have someone stock me up on cans of chicken soup or whatever so I can have my own private flu party. Been there, done that before.

I once spent New Years Eve in a basement apartment, while the entire extended family and my coworkers celebrated through New Year's Eve and Morning too in the room above my sick bed. That was fun... Not! My one redeeming memory of that was my daughter bringing me all these little doo das from the party. She was about five or so, and kept bringing me food, and party favors, and telling me about what people were doing. That is a cherished memory.

My potential flu situation now is unique in that my daughter is now quite a bit older, and I still have family support. If she were younger, and could not easily be separated from me, then I would change my tune and definitely seek aggressively to be vaccinated for H1N1. As it is now, I will keep asking, but will not get toady about it.

If my daughter gets swine flu, we will be extra careful, and take all possible care to treat it quickly. I also believe that she will also likely catch it early. One of the positive side affects of having vasculitis -- with all its freaky mystery symptoms -- is that patients develop an elevated awareness about their body and its symptoms as compared to people without a chronic illness.

For example, Meaghan logs her vitals twice a day when she takes her meds, so she will catch on if her fever begins to spike even a few points. I choose to believe this,

Catching flu symptoms early will help cure them quickly.

There is my tip for the day. Go ahead, write it down and tape it to your fridge. I will wait.

How do I avoid the swine flu?

I studied some CDC maps and flowcharts about disease vectors, but I will not bother you with an attempt at interpretation. The bottom line is this is a numbers game and you want to try to stay out of the line of fire. Translation: Stay away from sick people.

If everyone at work is sick and they refuse to go home, then you go home. If they stay home, then don't be a schmuck and go visit them. Let someone who is not immune suppressed take them their chicken soup.

I have always been an avid hand washer. The ABC Song is on my greatest hits list of all time favorites. It was the first song I sang to my newborn daughter, and I hum it when I wash my hands to follow the rule about proper hand washing. It takes time and soap to kill germs. It takes soapy time. So, sing the song and make lots of bubbles.

So, I have a head start. In my family, we wash hands, use the alcohol sanitizer, cough into our sleeve, we stay away from "booger people," and if we think we are sick, we stay home.

The experts declare that those same precautions I grew up with are still the same ones we all need to use now. I guess we must all take them just a bit more seriously this year, but hey, is that a bad thing? I practically accost strangers now when I see them fail to wash their hands. Unsanitary practices are becoming more socially taboo now, and I am not displeased.

So, eat right, exercise, drink lots of water, and follow the standard flu season precautions like hand washing and stay away from sick people.
That is as good as it gets folks.

If this outbreak convinces the booger people to wash their nasty hands, then I will be grateful... assuming civilization survives the outbreak. Do you think we will?


For more information, you should visit Flu.gov.

Flu.gov
"Flu.gov provides comprehensive government-wide information on pandemic influenza and avian influenza for the general public, health and emergency preparedness professionals, policy makers, government and business leaders, school systems, and local communities."
http://www.flu.gov/

Learn all about flu vaccines at the Center for Disease Control (CDC):

CDC - Seasonal Influenza (Flu) - Key Facts About Seasonal Flu Vaccine
http://www.cdc.gov/flu/protect/keyfacts.htm

For information about the International Flu situation, you can go here:

WHO - Global Atlas Of Infectious Diseases
"In a single electronic platform, the WHO’s Communicable Disease Global Atlas is bringing together for analysis and comparison standardized data and statistics for infectious diseases at country, regional, and global levels."
http://gamapserver.who.int/GlobalAtlas/home.asp

Stay safe everyone. And try not to freak out too much.

My final thought is this --

If you get sick, and you are not sure what to do, then ask your doctor.

Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Central NM Chapter - Vasculitis Foundation
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org

"Lucy in the Sky With Diamonds" gives exclusive interview

A friend sent me this article and I thought you might like to read it. I can't help but wonder if Lucy would have been diagnosed much earlier if she lived in the US and had access to our medical care system.

Carlene

Lucy, the girl with kaleidoscope eyes who inspired the Beatles... and her final, tragic battle.

Remember the song, "Lucy in the Sky With Diamonds". People always thought the Beatles wrote this song when they were all tripped out with LSD, but I had heard the story that it was from a picture that John Lennon's kid brought home from school. Interesting story about Lucy.

http://wwwdailymail.co.uk/health/chat/article-1217848/Lucy-girl-kaleidoscope-eyes-inspired-Beatles--final-tragic-battle.html

Here's the article, for your convenience:

Lucy, the girl with kaleidoscope eyes who inspired the Beatles... and her final, tragic battle
By Bonnie Estridge
Last updated at 9:43 PM on 03rd October 2009
 
The woman who opened the front door had taken a while to get there. Although Lucy Vodden was clearly frail beyond her years, her hair sparse and face puffy from medication, when she smiled it was easy to see the happy little girl that she once was - the little girl who ran around with Julian Lennon at nursery school. 
Lucy was only 46 years old when she died last week from an infection that was a complication of lupus, the disease she had courageously battled for 15 years. 
Housebound and extremely unwell, it happened after she had mustered up the energy to enjoy the first break she and her husband Ross, an environmental health officer, had taken in eight years. 
 
Tragic: Lucy Vodden died last week aged 46
 
John Lennon in 1964, before he penned the famous hit inspired by Lucy
She gave her interview to The Mail on Sunday in a bid to publicise the autoimmune disease that, in her case, had taken so long to diagnose and so subsequently had been harder for doctors to treat. 
Visibly exhausted, Lucy was determined to finish the interview so that others would learn from her experience the importance of early diagnosis. 
She had made the news earlier this year when it was revealed that she was the 'Lucy' in John Lennon's classic song Lucy In The Sky With Diamonds. 
His four-year-old son Julian had drawn a magical picture of his playmate surrounded by sparkling stars while at Heath House nursery school in Weybridge, Surrey, and when he told his father his picture's title, John was obviously inspired. 
'I don't know why I called it that,' Julian said later, 'but I obviously had an affection for Lucy. I used to show Dad everything I'd built or painted at school and this one sparked off the idea for a song.' 
And while Julian grew up to be a singer and songwriter and now lives in France, and Lucy trained as a special needs nursery teacher and worked with autistic children in Surbiton, they kept in touch. 
Lucy, however, would endure a life dogged by years of unexplained ill health that cut short her career and robbed her of a chance to become a mother. 
'I feel permanently exhausted,' she told me. 'Any activity - such as emptying the dishwasher - feels as if it has caused my temperature to shoot up. The steroids make me bloated and some days I am completely swollen. I usually don't get depressed and I keep coping but it's difficult because I've always cared about my appearance. 
'I found it very hard having the spotlight on me recently. But if something good can come out of the publicity - if it can raise awareness so that any sufferers may get diagnosed earlier - then I'll be happy.' 
For it was only five years ago that Lucy finally found out why she had been sick for so long, and was diagnosed with lupus. 
Lupus is common and affects one in 1,000 people in the UK, mainly women between the ages of 15 and 50. 
The condition often remains undiagnosed or is mistaken for ME (Chronic Fatigue Syndrome), rheumatoid arthritis or MS. 
But delay in diagnosis is serious, as lupus can affect any part of the body and major organs can be damaged irreversibly before treatment has been started. 
In lupus (the Latin word for wolf, from one of the tell-tale signs, a butterfly-shaped facial rash once thought to resemble a wolf's bite) the immune system attacks the body and can cause damage to the kidneys, brain, heart and lungs. 
While incurable, if treated early there is a good chance that it will go into remission, lessening the risk of future complications. 
After her diagnosis, Lucy remembered the day that a large bouquet of flowers arrived at her home in Surbiton. They were from Julian who, when he heard that his 'girl with kaleidoscope eyes' was ill, sent her garden centre gift vouchers as she loved growing plants and took much solace in her garden. 
'It was lovely that Julian sent such a sweet note saying how sorry he was to hear I was ill. It really cheered me up,' she said, beaming at the memory. 
'My illness has had an effect on my memory but I still vividly remember Kenwood, the Lennon house at St George's Hill in Weybridge where there was a lovely swimming pool. 
 
Inspiration: The young Lucy
'As children, Julian and I ran around like mad things most of the time, he was full of fun and always smiling when we were at our nursery school. 
'I remember him bringing an enormous teddy bear into class and then refusing to take it home - so I brought my panda in to keep it company. 
'His mum Cynthia was stunning and I remember thinking how lovely her hair was,' she said, 'but I also remember being scared of John, although I have no idea why. Maybe it was because he was so famous. 
'When The Beatles' Sergeant Pepper album came out I remember that I preferred the track Good Morning with the sound of the cockerel crowing to Lucy In The Sky With Diamonds. In fact, when I first saw that now famous picture - which is supposed to be worth about £250,000 - I thought I looked like an alien! 
'I can't remember Julian drawing me. I don't know where the picture is now - I heard that a record company boss had it in his office but that may be just hearsay. 
'The last time I saw Julian was when we were in our early 20s and he asked me, "So how's Lucy in the sky getting on?"' 
As it turned out - not well. Lucy had started to suffer from a chronic inflammatory skin disorder, diagnosed as psoriasis. 
'In 1994, two years before I married Ross, I developed itching, scaling and very painful skin,' she said. 'It has a genetic component and there was psoriasis on both sides of my family, yet I seemed to have it particularly badly. 
'It is a chronic condition, which does relapse, but I was in and out of hospital. Eventually I had to give up my job, which was heartbreaking.' 
Lucy then faced another dilemma. The immuno-suppressives needed to treat the psoriasis have been linked with birth defects. Because she and Ross had 'always dreamed of having children', Lucy chose not to take the drugs, instead bravely putting up with the psoriasis until suddenly, in 2001, she went into remission. 
'I felt much better for the first time in years,' she said, 'and we wanted to start a family so I talked to a gynaecologist at my local hospital in Kingston upon Thames about having fertility treatment. He said my ovaries would need to be "fired up" with the hormone oestrogen due to my age and health problems.' 
She was thrilled to become pregnant within months but miscarried before her first scan at 12 weeks. 
'Afterwards I felt very strange, as though I had constant flu,' she sighed. 'My joints ached, I felt weak and tired all the time. 
'I later learned that the worst thing you can do to someone with undiagnosed lupus is to give them oestrogen because the hormone can trigger the disease but, of course, at the time no one realised I had it.' 
What Lucy was also unaware of was that she was suffering from antiphosopholipid syndrome, also known as Hughes syndrome, a condition that can be a complication of lupus. 
Her symptoms prompted her GP to send her to Professor Graham Hughes, head of The London Lupus Centre (www.thelondonlupuscentre.co.uk), who gave her the diagnosis of lupus. It was Prof Hughes who had discovered the link between lupus and sticky blood syndrome in 1983. 
He put Lucy on a course of steroids which worked incredibly quickly. 'I felt fantastic because the crippling tiredness disappeared,' she said. 
'I could clean the house, I was bounding with energy - but unfortunately this new lease of life only lasted for four weeks and then I developed a rash on my face, my hair started falling out and my joints swelled. 
'The steroids had been masking what was really going on in my body. I became a recluse because I didn't want people to see me looking so ill.' 
 
Drawn together: Julian Lennon as a toddler with parents John and Cynthia
Lucy decided having children was now out of the question. Having Hughes syndrome meant she had an increased tendency to form clots in blood vessels (thromboses) and her blood would be far thicker and stickier than was recommended for a healthy pregnancy. 
'This is why so many women with the disease have multiple miscarriages,' Lucy said. 
'Prof Hughes told me that a number of lupus sufferers had no idea that they had the disease because their symptoms may have been in the early stages - as mine were - and had gone undiagnosed.' Lucy paused. 
'In the end I felt it was too dangerous to try for children,' she said. 'Ross and I would have happily adopted or fostered but my health was far too fragile.' 
Prof Hughes says: 'So much has changed in the treatment of lupus that the majority of patients are able to lead a perfectly normal, active life and live a normal lifespan. 
'Lupus tends to arise in families where there are other autoimmune disorders, such as thyroid problems or coeliac disease, but the female immune system appears to be more susceptible than the male. 
'In some patients lupus is so mild that no medication is needed and in others everyday anti-inflammatory drugs give control. For others, steroids are prescribed and nonsteroidal drugs are also proving effective in controlling the illness. But a few patients need anti-cancer [chemotherapy] drugs to manage their condition.' 
Prof Hughes wants to raise awareness about lupus and says there are clinical pointers that could lead to an early diagnosis, using simple blood tests. 
'If, say, a 20-year-old female presented with prolonged fatigue or what they might describe as prolonged glandular fever, then this could make us sufficiently suspicious to test for lupus.' 
About one-in-five lupus patients also suffers from a tendency to excess blood clotting or Hughes syndrome. This can affect any organ, though the brain and, in pregnancy, the placenta are particularly vulnerable. 
'Thus headaches ,especially migraine, memory problems and balance difficulties are common complaints,' says Prof Hughes. 
'Hughes syndrome is the most common treatable cause of recurrent miscarriage. I would test any woman who has suffered two or more miscarriages: a simple blood test could prevent so much more tragedy.' 
Although it was too late for Lucy to become a mother, Prof Hughes gives hope to other women. 
'We have come a long way,' he says. 'The pregnancy success rate in Hughes syndrome has increased from 15 per cent 20 years ago, to more than 90 per cent today.' 
And sufferers will always be so grateful to Lucy. She raised the profile of this disease - not for herself, but simply to help others. 
 
Lucy in the sky: The now famous - and valuable - picture Julian Lennon painted of his nursery school playmate
Symptoms to watch out for 
Lupus can be triggered by hormonal changes such as puberty, the Pill and pregnancy. Sunlight, trauma or a prolonged course of some medications may also activate it. 
There may be a genetic link  -  lupus is often triggered in those where there is a family history of the disease and/or other immune system illnesses such as arthritis, MS and rheumatism. 
Anyone with suspected lupus should have blood tests. 
Symptoms include: joint/muscle aches and pains; a rash over the cheeks; extreme fatigue and weakness; rashes from sunlight; flu-like symptoms; headaches/ migraines; kidney problems; hair loss; swollen glands. 
Hughes syndrome is characterised by recurrent miscarriage, headaches and a tendency to blood clots (eg, DVT). 
 
www.hughes-syndrome.org.uk; www.lupusuk.org.uk; www.lupus.org.uk
 

October 2009 Chapter News

OCTOBER 2009 Chapter Meeting News
18:00 Thursday, October 15, 2009

This newsletter available by Email, but is best viewed with formatting intact here:
http://nmvasculitis.blogspot.com/

In attendance and having fun:
Joseph Carpenter (caregiver)
Meaghan Carpenter (patient)

RSVP:
Karla Kollasch (patient) travelling tomorrow, may make it in November

Special mention:
Carlene Hobbs (friend of patient) for posting a meaningful article to the NMVasculitis Google Group.

That article is good enough I may repost it in this blog.
If you get a second copy, just know I am also sharing it with others.

WHERE WOULD YOU LIKE TO GO NEXT MONTH?

If you are thinking of coming to a monthly meeting, you can influence the choice about where we meet. Send Email to Joseph. Let me know what you like to do, and we can go there. Just so long as we increase the public awareness about vasculitis, and get to know each other, I am open to most suggestions.

**ooOO Yes, Master, we can go to Hawaii
and have a luau on a moonlit beach at night... OOoo**

What? Huh? Did you say something? :o)

HERE WE ARE AT CALIFORNIA PIZZA KITCHEN (CPK)

Meaghan is off and running with her second root beer and she plans to order the Four Cheese Ravioli, which is a new menu item: Ravioli with fine herbs, imported Asiago, Mascarpone, Ricotta and Parmesan cheeses sautéed in a creamy Pomodoro sauce with fresh basil. Add sautéed mushrooms. Menu She was wanting italian for her birthday dinner, so that fits.

I am going for the Miso Seafood Salad. This is a great combination of shredded Napa cabbage with fresh avocado, julienne cucumbers, daikon, edamame, carrots, red cabbage, green onions, cilantro, crispy rice noodles and crisp wontons tossed in a Miso dressing and topped with blue crab and shrimp. Also available with chilled-grilled chicken instead of seafood. Menu

Are you drooling yet? I nearly was after we ordered.

MOBILIZING THE STUDENT BODY

Earlier this month, Meaghan spoke to the faculty sponsor for Junior Civitan at her school about organizing awareness events. Just in general terms, but they are open and welcome the idea. Her school has a history of encouraging community involvement so this action is overdue.

I have long held the opinion that along with celebrities, students have perhaps the best chance at getting things done because they are connected to a larger community at school that most adults. Their friends represent an available work force that will usually work for food, and that is priceless.

If only there was a better way to encourage and motivate these young people to join the cause and inspire them to help spread the word. We have to learn how to be hip and spread VF Awareness like a viral YouTube video.

HALLOWEEN IDEA

Do you have kids? Grandkids? Would you consider putting them in a Vasculitis Foundation T-Shirt for Halloween trick or treat? That message would get seen by everyone in the neighborhood and might spark a few conversations by itself, even if you never talk to a soul.

Boo!

WISH YOU WERE HERE

This meeting was more like a dinner, but we did discuss awareness ideas.

We have these meetings every month with the commitment that if you build it, they will come. The model has proven true a few times when we were fortunate to make friends with a few patients and caregivers over the past year. This is similar for me to other time when I have organized non-profit social events in the past. The basic idea is just keep going at the same time so people know you are reliably going to be there. Once you become a calendar event, eventually some people will make it a regular thing.

In Albuquerque, this has proven true in the months when we did have attendees. We have had wonderfully productive meetings, if you define productivity as sharing knowledge about vasculitis and basically just the knowledge that even with a rare disease, you need never be totally alone.

I believe they found our previous location was unappealing, or perhaps less attractive geographically, so that is why we are moving the meeting around a bit to more popular spots in hopes of catching peoples attention. I have also been speaking to location managers about sponsoring incentives, but since our membership is so reticent to actively participate, or are busy with other things, or have transportation issues, then we are faced with the challenge of figuring out the right combination of location and other factors to create an atmosphere that will attract people to come out of hiding more often.

I just flashed on another idea. I should look up a list of retirement homes. The nurse will know the diagnosis of most of the residents, so I can discretely request if there are any vasculitis patients. Then if there are any, we can offer to come speak to them. So many ideas, so little of me to go around. Would you like to help? Please let me know.

RECRUITING FAMILY & FRIENDS

Going forward, I made another decision today. I have been hesitant to impose on close relationships for fear of burning them out, but now I feel I may have gotten it backwards. I do not need them to do anything except show up and be friendly. They are inclined to do that with each other anyway, so... As a means of gaining more good company at these meetings, I am beginning today to invite friends, family, and whoever I meet that shows any interest of any kind to attend our monthly meeting. That meeting is really mostly a social event after all. Not a medical seminar.

---

Though I hope we do have some of those in our future.
I know some docs who are willing to come to a meeting and speak to you,
if you let me know you will come.

---

The bottom line is to eat, drink and be merry. I want our organization to espouse the notion that especially with a rare disorder like vasculitis, people should be encouraged to enjoy life.

Though rare, there are others out there with vasculitis, and they do not congregate naturally.

Like you, they are shy to be early joiners, so by beefing the numbers with family, we might also attract more diagnosed members to our "chapter family." This chapter was founded by Karla and myself on the notion that New Mexico vasculitis patients and their families might be able to offer each other needed support. So, from now on families are invited and encouraged to attend.

If you plan to bring a large group, let me know so I can plan accordingly.

As a way of putting thoughts into action, I spoke to my brother today. He has six kids. It is like having a smallish army at your disposal. I imagine outfitting all of them with VF TShirts and going places. That is without a doubt going to attract some attention. I think we will be giving custom designed Vasculitis T-Shirts as gifts this year. Hmmm... Reminder to self. Self, double-check with VF office about copyright use on VF logos, etc.

HEY, WHAT ABOUT THAT GOOGLE GROUP?

I have reserved membership in that group to only NM membership. The philosophy behind that was to encourage you to be open with your stories because you would know that only local members would see those Email messages. However, that is not how it is working out. You guys do not post much, nor do you reply to posts.

Soooo... I will sit on this for a bit, but I am considering opening that group up to regional or even national membership, so long as the person applying is confirmed as a patient of caregiver. If I do that, then we will see more activity in there for sure, and perhaps you will be encouraged to participate more yourselves. Any responses? Ideas? I am not down on anyone here. I just want to stir the pot a bit and get things moving.

I know you have things to say. You are human beings with intelligence and emotions. Share what you know, and who you are. You are not alone, and others will benefit from your experiences.

---

Hint: Please share your own stories and ideas so I can include them
with monthly chapter updates. Send me Email!
You can post yourself, or at your request,
or I can quote you anonymously.
Just please let us know how you are doing.

---

MOVING THE MEETINGS

Now that we are moving the meetings around to do more fun things, I hope you will join us. Keep an eye on the Meetings page, because the meeting locations have become a moving target. We are not hard to find, but you will have to check the website to know for sure where we are going each month.

For example, I watched a movie yesterday called Nick & Nora's Infinite Playlist. One of the through lines of the story showed this young couple and their friends in search of a popular band that was going to play in a mystery location. Part of the suspense of the movie was watching them figure out where to go. I do not want our chapter meetings to be hard to find, or to involve wild goose chases, but the settings also should not be boring. Miniature Golf anyone? How about a picnic? Talk to me and let me know what you would like to do.

We are about ready to leave CPK. Meaghan and I loved our dinners. They were both tasty and filling. We also went all out and ordered dessert. We shared a single helping of Chocolate Soufflé Cake. A Belgian chocolate soufflé cake, served warm with CPK's triple-thick hot fudge on vanilla bean sauce. Also available à la Haagen-Dazs. Menu

This was Meaghan's birthday dinner, so we went full out with a nice dinner, sodas and also dessert. That was not free.

People should keep in mind that at an average meeting, we sometimes eat a meal, and sometimes just have coffee and perhaps dessert. It does not have to be expensive. I always like to choose places where people in attendance can order just dessert, or a full dinner. The menu here is as varies as most places. It is not the cheapest, but it is my intention that cost should not become an issue.

Come and drink water if you like. I will keep the wait person happy
with my innate charm and Meaghan with her good looks.

When considering CPK, one has to consider the time of day. CPK is so busy now that it is possible other people might actually come to our meeting and not known how to find us.

GETTING ATTENTION

We have the VF logo displayed, but unless someone knows who or what to look for, it is not so obvious what we are about. [I am suddenly imagining using a helium tank to take better advantage of the VF balloons by actually inflating them so they float. Prettiful!]

The entire point of doing this is to see and also to be seen by others, so I will have to work up some kind of sign that stands out the table, or something to draw more attention to our meetings without becoming carnivalesque.

T-SHIRTS FOR AWARENESS IDEAS

Meaghan has a certain slogan that she wants to put on a T-Shirt. I do not want to share it now, because she plans to go to the mall have have a shirt made. I will share a photo later.

This got me to thinking... again. This may sound obvious, but I recall conversations with "several unnamed people" who agree that the Vasculitis Foundation T-shirts are nice, but kind of boring. they appeal to patients, but not to the general public. They are full of the message, but do not have the aesthetic appeal that will motivate people to want to wear them around town.

I for one wear a rather large and very tall size. I am seven feet tall. The point is none of the VF shirts will ever fit me, so I am destined to custom order one or make one, any way. Why not something really cool and original? Maybe I will emulate my daughter, and discover some expression that shares a positive spin, or in her case an ironic one, about who I am in relation to vasculitis.

In my minds eye, I can see these T-shirts sold at any department store. I have seen the result of consignment deals brokered on behalf of the American Heart Association and anyone with eyes and a credit card knows that Breast Cancer is certainly not pulling any punches marketing those pink ribbons all over the place. Wherever they go, we should follow, because they are everywhere. So too should we be.

Someone at the national level should broker a similar mutual benefit deal where the corporate partners are provided inherent incentives to carry the distribution costs of a given awareness program in exchange for good guy visibility, and a slice of some profit. Make is sale-worthy, and they will go for it. Thinking beyond T-Shirts, the designs have to be cool enough to sell for anything good to happen.

Consequently, I think the collective WE who make up the inside world of vasculitis patients and caregivers should create or solicit cool designs for VF T-shirts and other items that teenagers, and others, will want to buy and wear regardless of their personal affiliation with vasculitis. Red is a great base color, but lets not be limited. Plus, "cause" shirts, posters, buttons, stickers, are very popular with all ages. People like to wear the cause and be seen caring. Who cares how ironic it all is, so long as the message is spread and the dollars end up going to research?

Perhaps a national or international T-shirt design contest would be fun? Some Email and a few creative web pages on would be cheap to manage and go a long way towards starting this thing up. I think will send this to the VF head office and to the board of directors as a suggestion. Maybe they already have a plan? Who knows?

SIDEBAR ABOUT A DOMAIN NAME CURRENTLY TRAPPED IN NORWAY

Speaking of VF, has anyone tried to politely reach the lessor of the domain VF.ORG to see if it might be available? It is currently registered to Karl Oskar in Narvik, Norway but there is no website published. Maybe it is just sitting there unused and could be coaxed into service for the VF awareness efforts?

Whois contact data:
Admin ID:MONIKER1788507
Admin Name:Karl-Oskar
Admin Organization:Filter Visual DA
Admin Street1:Dronningensgate 29
Admin Street2:co/Karl-Oskar Fosshaug
Admin Street3:
Admin City:Narvik
Admin State/Province:Narvik
Admin Postal Code:NO-8514
Admin Country:NO
Admin Phone:+47.90123466
Admin Phone Ext.:
Admin FAX:
Admin FAX Ext.:
Admin *******@rl-oskar.no

TWITTER IS COMING SOON TO A WEB SITE NEAR YOU

I use Twitter to update my coaching web site, and it is great for posting last minute news. It is something I use sparingly, but what it really great about it is I do not need to be anywhere near a computer to post an update. I can simply text that in, and it gets displayed in the site. So, I think I will add that to the NMVasculitis.org site as well. Should be useful when we are having an event.

If you start participating actively,
I might even let you post to Twitter as well...
Can you be bribed with Twitter tweets?
Come on, can you?

I am reminding myself now to update the Facebook wall page for this chapter.


STARTING A DIALOGUE SHOULD BE THE GOAL OF ANY AWARENESS CAMPAIGN

Totally stuck on this shirts idea... I suddenly envision a shirt with a large copy of the triple blood cell VF logo shown alone in a with no text at all on the front of a shirt. ON the back is some pertinent catchy slogan. Then print the VF website address, phone number, whatever, in smaller print maybe on a pocket or maybe just in subtext below the slogan on the back. That should be legible, but still relatively small so that when someone comes closer to read that smaller text, they are drawn into initiating a conversation with the wearer of the shirt, hoodie, etc..

The slogans could vary, like various patient inspired themes related to Prednisone Awareness, Overcoming Pain, Positive Outlook, Funny jokes about side effects, etc. Maybe even pithy quotes of words used by the patients themselves to describe their condition. Preferably the positive or funny sayings... :o) Not the “wish you were here in vasculitis hell” variety.

Though, I am suddenly thinking, “I walked a mile with vasculitis, and my peripheral neuropathy is killing me.” Corny... but I bet you can do better... I am waiting.... Email me.

For example, Meaghan's blog is subtitled: "Welcome to the Predni-Zone". I think that would be great on a T-Shirt. People would natural stop and ask what it means, and that conversation would lead to increased awareness. Others patients and caregivers might have similar slogan-like sayings they attribute to their illness.

Speaking of ownership, what about "I PWN Churg-Strauss". Pronounced "POWNE" This is a take on the gamer slang, "PWN = Power Own" which means to dominate your opponent in the extreme sense. Young people who are familiar with the term PWN would wonder if [insert name of your condition here] was a new computer game, and the questions would follow. The T-Shirt, poster, mug, bumber sticker, etc, would be cool enough to be discovered adorning the hippest people at the swankiest places, and all that would start up awareness conversations.

How to do this in an affordable way? Consider partnering with Cafe Press the online promotions company. They make the stuff as it is ordered and a percentage goes to the sponsoring organization. So, less percentage, but a higher volume. To main tain non-profit status, this must be done at the national level, but it is just possible that if a chapter has their own successful design, then perhaps a bit of the proceeds could also be earmarked to offset chapter or regional awareness event costs. Not just because, but when there is an event, it would be easier to request a budget if you know your chapter is also producing income. Hmmm....

Hey, lookee here:
The VF of Canada has it going on already. I also see representation from BechetsCanada.com and CNSVF (Central Nervous System Vasculitis Foundation). They are not standing still. Neither should we.

Hello Vasculitis Foundation (VF)?
Hello Churg-Strauss Syndrome Association (CSSA)?
Hello others out there?

Another thought would be to make the artwork available and allow patients and their families to exercise their creativity by designing their own T-Shirts and having them made, like Meaghan plans to, at the local T-Shirt company. This method is less controllable, but it is also more personal and offloads the cost of printing and distribution to the grass roots level. By partnering that effort with a T-shirt contest, people would then be encouraged to submit their creations for consideration for some award, like perhaps free registration to the next VF Symposium in 2010? Or the one after that in 2012? Whatever... Just do something to keep things going.

One final thought as we are actually standing up to leave CPK.

If twenty people showed up at this monthly meeting and ordered a drink and talked for an hour, it hurts nobody and helps the participants.

Come by the next chapter meeting and say hello. Better yet, the next time you go to the doctor, find out who the others are and invite them to come with you.

Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.

October 2009 Meeting at California Pizza Kitchen

This month is a double header.

Meaghan's birthday is October 14th, and the monthly VF meeting is October 15th. So, we are going to CPK to celebrate both events.

OCTOBER 2009

The October 2009 meeting of the NM chapter of the Vasculitis Foundation will be on October 15th.

This month, we are going to California Pizza Kitchen, in the Uptown Mall.

California Pizza Kitchen Store 295
2241 Q St
Albuquerque, NM 87110-2279
(505) 883-3005
www.cpk.com
MAP