Raising Awareness: 1 interesting fact at a time

[amldaley]

Originally Posted by Reina

Kawasaki Disease & Kawasaki Disease Foundation

I had heard of KD but had no idea of the details. Thank you for sharing!

[Melaine]

Originally Posted by Reina

1) The name of a charity or organization or cause or issue important to you

Kawasaki Disease & Kawasaki Disease Foundation

2) The link to whatever you consider a good resource

http://www.kdfoundation.org/

3) One INTERESTING FACT that you think someone might not know and would help raise awareness, knowledge or understandiing about the matter

Kawasaki disease (KD), also known as Kawasaki syndrome, is a serious illness characterized by inflammation of blood vessels throughout the body that primarily affects young children and infants. Kawasaki disease is the leading cause of acquired heart disease in children. Although about 80 percent of patients are under five years of age, older children and teenagers can also get KD, but this is uncommon. KD is more common in boys than girls, and the majority of cases are diagnosed in the winter and early spring. It is not contagious.

Although the vast majority of patients who receive timely treatment recover completely, a small percentage develop heart problems. KD can cause abnormal changes in the coronary arteries and other areas of the heart. The most serious health threat is an aneurysm, which is a ballooning of the blood vessel wall. That’s why the right diagnosis and timely treatment are so important.

In some ways, KD is a mysterious illness. The precise cause is unknown. Researchers believe that some kind of infection, as yet undefined, or an unknown environmental factor may trigger the illness in individuals who have a genetic predisposition. Various reports have linked KD to a number of possible causes, including a prior respiratory illness, exposure to carpet-cleaning chemicals, use of a humidifier or living near a stagnant body of water. However, there is no firm evidence that any of these factors causes KD.

My sister almost died from KD....we are convinced it was the freshly cleaned carpet she crawled on at a vacation home. She has some lingering health problems as a result, including losing her gall bladder that looked like an "80 year old's" at age 16. The biggest thing about KD is that even doctors don't know enough about it.

Awareness definitely needs to go up on this.

[infomama]

I learned of this on NPR this morning and I am so disturbed by it. Every single day these women/girls live in absolute fear of being raped. Raise Hope for Congo is a part of The Enough Project.

"Sexual violence and rape in eastern Congo occurs on a scale seen nowhere else in the world." There is a solution for the plight of women and girls in the eastern Democratic Republic of the Congo. By promoting peace, providing protection, punishing the perpetrators, and promoting the prevention of sexual violence and other crimes against humanity, the 4Ps, we can end the conflict, stop atrocities, and protect and empower Congolese women.

www.raisehopeforcongo.org/content/initiatives/violence-against-women
www.cbsnews.com/stories/2008/01/11/60minutes/main3701249.shtml (this is an older article but tragically the same information was in the broadcast I listened to this morning)

[swissair81]

I support the Gift of Life, which is a bone marrow registry for people of Jewish ethnicity (most people will find a match from within their own ethnic group).

I just made a donation in memory of Ayelet Galena- a beautiful 2 year old girl who passed away on Tuesday. She received a bone marrow transplant in August for bone marrow failure, and tragically only made it to 150 days post transplant. I also signed up to be on their registry. I would be honored to give someone a new lease on life if I was found to be someone's match.

http://www.giftoflife.org/dc/Blog.aspx?BlogID=413

[val01]

Originally Posted by swissair81

I support the Gift of Life, which is a bone marrow registry for people of Jewish ethnicity (most people will find a match from within their own ethnic group).

I just made a donation in memory of Ayelet Galena- a beautiful 2 year old girl who passed away on Tuesday. She received a bone marrow transplant in August for bone marrow failure, and tragically only made it to 150 days post transplant. I also signed up to be on their registry. I would be honored to give someone a new lease on life if I was found to be someone's match.

http://www.giftoflife.org/dc/Blog.aspx?BlogID=413

I just wanted to say thank you for donating to this cause. My daughter died of a Jewish genetic disorder and I am sure her parents are touched at your kindness.

Valerie

[Melbel]

I am providing information on Lyme Disease to hopefully increase awareness and help others receive a much more timely diagnosis than our son, who saw countless doctors over a period of almost a year, none of whom suspected Lyme Disease. I know this is long, but I am trying to make the information easily accessible because the testing/diagnosis/treatment/symptoms are complex.

Lyme Disease is caused by a spirochete bacteria (Borrelia burgdorferi) and is transmitted by certain species of deer ticks. Most human cases are caused by the nymphal, or immature, form of the tick, which are about the size of a poppy seed. Because their bite is painless, many people do not realize they have been bitten. Furthermore, ticks harbor many other diseases that can be transmitted to humans aside from Lyme Disease including other bacterial infections, viruses or parasites.

Lyme Disease symptoms may include, but are not limited to fever, headache, fatigue, and in some cases, a skin rash called erythema migrans (EM) that may look like a bullseye. If left untreated in early stages, infection can spread to joints, the heart, and the nervous system (neuroborreliosis). Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash, facial palsy, arthritis), and the possibility of exposure to infected ticks. Testing for Lyme Disease is fraught with problems. Indeed, commonly used laboratory tests often give false negative results (60% of the cases are missed using CDC two step testing and criteria according to a Johns Hopkins study), and on occasion, false positives.

Lyme disease has been declared “the new great imitator,” with symptoms that are similar to many other illnesses, often resulting in misdiagnosis. Research has shown links between Lyme Disease and multiple sclerosis, Tourette’s, amyotrophic lateral sclerosis (ALS), Epstein Barr, Fibromyalgia, Chronic Fatigue Syndrome, Chron’s Disease, various psychiatric illnesses, among many other ailments.

The CDC estimates that new Lyme cases are at least 4 times more common annually than new HIV/AIDS cases. Around 25% of all reported cases are children. The CDC states that Lyme disease is most common among boys aged 5-9. This age group is affected at three times the average rate of all other age groups. According to research, children are bitten by ticks more frequently around the head and neck, making them more vulnerable to brain and central nervous system infections. The resulting neurologic symptoms of Lyme disease are often misdiagnosed, unfortunately, as was the case with DS. With Lyme, the mistake is especially damaging since a delay in treatment can turn a curable, acute infection into a chronic, treatment-resistant disease. Without question, Lyme Disease should be considered by the public and clinicians in the differential diagnosis of patients with signs, symptoms, and environmental exposure compatible with tick-borne illness. The possibility of other tick-borne infections such as Bartonella and Babesia should be considered along with Lyme.

The CDC estimates that the number of cases is up to 12x higher nationwide than the reported cases, and many experts believe that there are exponentially more cases in areas where there is poor awareness of the disease.

Some recommended steps to prevent Lyme Disease and other tick borne infections include improving awareness, avoiding tick-infested habitat, using insect/tick repellent, and checking for and properly removing attached ticks promptly.

For more information:
Lyme in Children: http://www.LymeDisease.org/resources/children.html

Under Our Skin, a documentary, shows the struggles and controversies faced by individuals suffering from chronic Lyme Disease (available for streaming on Netflix or Hulu):
http://movies.netflix.com/WiMovie/Un...?locale=en-US]
http://www.hulu.com/watch/268761/under-our-skin

Cure Unknown: Inside the Lyme Epidemic, a highly acclaimed book: http://www.amazon.com/Cure-Inside-Ep.../dp/0312378130 (a shorter article by the same author can be found here: http://www.psychologytoday.com/blog/...sease-part-one)

TESTING
A Lyme Disease Western Blot is an antibody test and thus false negatives are not uncommon. Nonetheless, it is a good place to start (skip the Lyme ELISA or general screen because it misses about 1/2 of actual cases; you also do not want the "reflex" test that starts with ELISA screen).

lab-test-sensitivity.jpg

Lab codes:
Quest: 
8593 CPT Code 86617 (x2) Labcorp:
163600

Many prefer to have a Western Blot through the lab iGeneX (www.iGeneX.com) for three reasons: (1) iGeneX tests for multiple strains of Borrelia Burgdorferi (Bb), the bacteria that causes Lyme Disease (commercial labs such as Labcorp and Quest only test for a single strain of Bb); (2) IGeneX also considers additional highly relevant bands 31 and 34 (assuming you did not have the Lyme vaccine that was briefly on the market); and (3) iGeneX reveals intensity for specific bands (not present, equivocal, low, medium and high).

Western Blot test results will include both IgG and IgM assays. It is critically important not to look at the NEGATIVE or POSITIVE summary result of the Western Blot test. That criterion is based on CDC surveillance guidelines that were not intended to diagnose Lyme disease and miss about half of actual cases pursuant to numerous peer review studies. Instead, it is important to carefully consider Lyme-specific bands. Many Lyme doctors believe that a single Lyme-specific band, along with clinical presentation, is sufficient to diagnose Lyme Disease (with an acknowledged 3% false positive rate). Likewise, in China, a single positive IgG band coupled with a single IgM band is considered to be a positive Western Blot. In comparison, the CDC’s surveillance criteria require a total of seven (7) positive bands. The following bands are generally considered to be Lyme-specific: 22-25, 28, 30, 31, 34, 35, 37, 39, 66, 83 and 93. If you do not see a break down of IgG and IgM bands on the test results, then the lab ran the wrong test (this happens frequently).

The blood tests must be considered in conjunction with clinical presentation.

If possible, also get a CD57 through Labcorp. HNK1 (CD57) Profile Test Number: 505026 CPT Code: 86356; 86357. This test checks for the level of a particular type of Natural Killer cell. An absolute value of 60 or less is indicative of either Lyme Disease or AIDS.

Keep in mind that if the tests come back negative, not only are many people seronegative but also, that there are other Lyme like illnesses that are pread by ticks (i.e. Bartonella, Babesia, Ehrlichia, Rocky Mountain Spotted Fever, Mycoplasma, etc.). These illnesses are harder to test for, but are worth consideration.

SYMPTOM CHECKLIST: http://lymedisease.org/lyme101/lyme_..._symptoms.html

Note - If you suspect Lyme, steroids are absolutely contraindicated because they suppress the immune system.

[AnnieW625]

I know we have just over a month away, but just thought I would post this information here. The Jr. Leagues in California and their State Public Affairs Committee first recognized May as PPD Awareness Month in May, 2010. It was then adopted again in 2011, and I am under the impression it will be again.

Here is the link from the Association of Junior Leagues International from May, 2011, which also includes a link to downloadable materials on the lower right hand side.

Please remember to Speak Up When You are Down! (and if you google this term you will find many local links to dealing with PPD).

(mods., or The Fields I would really appreciate if you could put a sticky at the top of the lounge, and the pregnancy forums for this because I think with all of the recent talk about PPD I think it might be helpful to have present so members can find answers to their own PPD issues or research how to deal with PPD if it becomes an issue after their babies are born)