February 28^th , 2009, is…

 

Rare Disease Day

 

 

 

 

Have you ever heard of Gaucher disease?  I hadn’t either – until I got to know a little girl named Aaliyah & her family.  Gaucher disease is just one of the 6 to 8 thousand  different “rare diseases” out there!

 

 

Here are 10 more rare diseases you may not have heard of:

 

“Top 10 Rare Diseases” [click]

(by Discovery Health & NORD)

 

 

If you’ve watched the show “Mystery Diagnosis” on Discovery Health, you’ve likely heard of a number of “orphan”/rare diseases.  Discovery Health has joined with NORD (below), as their media partner, to help promote awareness for Rare Disease Day.

 

 

Now, here’s something more surprising:  While something like Gaucher disease or Arnold-Chiari Malformation or Mitochondrial Disease or “Angel-shaped phalango-epiphyseal dysplasia” (one of the many which I just noticed, in researching this) may sound rare to you &/or be something you’ve never heard of, lots of the so-called “rare diseases” are definitely ones most of us have heard of.  Here are just a few which fall under the “rare disease” category:

 

AIDS                             Alzheimer’s                                            10 types of Anemia

ALS                              Acute Liver Failure                                 Acute Lukemia (7 types)

Autism                          Sleep Apnea                                          Anorexia Nervosa

Bulimia                          3 types of Arthritis                                Colon, Prostate & Skin Cancers

Cataracts                      Carpal Tunnel Syndrome                      Chronic Fatigue Syndrome

Celiac Disease               Cerebral Palsy                                       Colitis (2 types)

Clubfoot                       Crohn’s Disease                                    Cystic Fibrosis

 

…and those are just a few which I plucked from the A-C listings!  Pretty recognizable stuff, wouldn’t you say?!

 

 

Rare diseases affect nearly 30 million Americans and countless others worldwide.

 

 

A rare (or “orphan”) disease is generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States.  I don’t know about you, but having up to 200,000 people affected does not sound like something I , personally, would call “rare” (which is something I’ve brought up, before, in relation to the issue of Childhood Cancers & other health issues, here on Care-Aware).

 

 

75% of rare diseases affect children.

30% of rare disease patients dir before the age of 5.

 

 

Rare diseases (as a whole) represent a large medical challenge, in many ways; plus, there’s a lack of financial or market incentives to treat or cure the diseases, which makes for a serious public health problem; and, people with specific rare diseases, by definition, don’t have the critical-mass required to create large, influential advocacy organizations (which is why the rare disease organizations are so important).

 

 

80% of rare diseases have identified genetic origins.

Other rare diseases are the result of infections (bacterial or viral),

allergies and environmental causes, or are degenerative and proliferative.

 

 

The U. S. Congress enacted the Orphan Drug Act (1983) to provide incentives for medical pharmaceutical and product developers to focus on treatments for victims of rare diseases.  Since that time, there have been over 18,000 products studies as possible treatments for rare diseases, and 326 of those have been approved by the FDA.  Most of these were for diseases that had no approved treatment.  So, there’s been some progress; but (as I’ve personally seen) there’s still a loooong way to go, in addressing all of the issues & illnesses!

 

 

No cure exists for the vast majority of rare diseases.

 

 

Rare disease patients are, indeed, treated as the “orphans” of most health systems – they are often left without diagnoses, treatments, information, appropriate care, research & funding, & societal support… all of which also leaves them largely without hope. 

 

 

This year’s focus for Rare Disease Day is “Patient Care: A Public Affair!”  Please support rare diseases (& the people/families who are affected by them).

 

 

Sources: EURORDIS; NORD; NIH-ORDR; Orphanet; RDD

[see links below]

 

For More Info on Rare Diseases, Visit:

 

EURORDIS (EU)

 

National Organization for Rare (NORD)

 

Office of Rare Disease Research

National Institutes of Health (NIH)

 

Orphanet

 

Rare Disease Day Website

 

 

NOTE:  There is also a Rare Disease WEEK in Spain, which occurs in October.

 

 

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February is…

 

 

National Marfan Awareness Month

 

 

 

Marfan syndrome is a connective tissue disorder which affects multiple systems in the body.  People with the condition are frequently taller than other non-affected members of their family, with disproportionately long limbs, fingers and toes. They often have an indented or protruding chest bone, a curved spine (scoliosis), flat feet, a high-arched palate in their mouth and loose joints. The weak connective tissue can also be found in the aorta, and the constant pounding of the heart can cause this fragile tissue to enlarge or even tear if precautionary measures aren’t taken.

 

 

• About half of those who have Marfan syndrome are undiagnosed.

 

• If the condition isn’t diagnosed and treated, affected people are at an up-to-250-times increased-risk of suffering a tear or rupture of their aorta (the large artery that carries blood from the heart).

 

• People with Marfan syndrome can live a normal lifespan despite the life-threatening heart complications they face – if they are diagnosed with the disorder and receive proper treatment (to slow the growth of the aorta and surgically repair it before it tears), & implement some lifestyle adaptations (no contact or competitive sports).

 

 

A breakthrough research study on Marfan syndrome (2006) identified a commonly prescribed blood pressure medicine (losartan - Cozaar) which prevents and may even reverse the potentially-fatal weakening of the arteries in mice with Marfan syndrome, & has also been shown to positively impact the muscle degeneration in those mice.

 

 

For more information on Marfan syndrome, visit:

 

The National Marfan Foundation [click]

 

 

 

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Reglan (metoclopramide) WARNING: Tardive Dyskinesia Risks

 

 

Reglan (metoclopramide - a drug used to treat gastrointestinal disorders) manufacturers must now add an additional boxed warning to their drug labels about the risk of its long-term or high-dose use, now.  The drug is available in a variety of formulations including tablets, syrups and injections.

 

 

According to the FDA, chronic use of metoclopramide has been linked to tardive dyskinesia, which may include involuntary and repetitive movements of the body/extremities (lip smacking, grimacing, tongue protrusion, rapid eye movements or blinking, puckering and pursing of the lips, or impaired movement of the fingers), even after the drugs are no longer taken.  These symptoms are rarely reversible and there is no known treatment.

 

 

The development of the condition is apparently directly-related to the length of time a patient is taking the drug & the number of doses they’ve taken.  Those who are at the greatest risk include the elderly (esp. older women) & people who’ve been on the drug for a long time.  It is recommended that treatment with this drug should not exceed three months.

 

 

Read the full FDA Advisory on Reglan (metoclopramide) HERE [click]

 

Source: FDA

 

 

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The Month of February is…

 

National Cancer Prevention Month

 

 

 

There are a lot of causes for cancer which are yet-unknown; & one’s we don’t  know how to prevent. 

 

 

However, nearly one-third of cancers are preventable; & researchers have found a number of things we can do to reduce our risks of getting cancer; so why not at least do what we can… about what is known to help?

 

 

Here are some things we can all do, now:

 

 

• Be as lean as possible without becoming underweight.

 

• Be physically active for at least 30 minutes every day.

 

• Avoid sugary drinks.

 

• Limit consumption of energy-dense foods (particularly processed foods which are high in added-sugar, or low in fiber, or high in fat).

 

• Eat more of a variety of vegetables, fruits, whole grains and legumes such as beans.

 

• Limit consumption of red meats (such as beef, pork and lamb) & avoid processed meats.

 

• If consumed at all, limit alcoholic drinks to 2 for men & 1 for women a day.

 

• Limit consumption of salty foods & foods processed with salt (sodium).

 

• Don't use supplements to protect against cancer. [Interesting, huh?!]

 

• It is best for mothers to breastfeed exclusively for up to 6 months &then add in other liquids and foods.

 

• After treatment, cancer survivors should follow the recommendations for cancer prevention.

 

• Don’t smoke or chew tobacco.

 

 

Source: WCRF/AICR Second Expert Report

 

[Welllll… I must say that I’m feeling a lot less silly about making “eat more beans/legumes” my New Year’s resolution, this year, now!   LOL]

 

  

I recently also ran across this blog post which was done by Fran Dresher - the actress who’s probably best known for “The Nanny”, for Nat’l Cancer Prevention Month.  You may know that Fran is also a cancer survivor who wrote the book & started the movement which are both called “Cancer Schmancer.”  Fran gives 6 tips for reducing our cancer risk & also does well at pointedly telling women/caretakers why we should protect our health (which is especially important, because cancer is one of the most common causes of death in American women).

 

Read Fran’s Cancer Prevention Month Blog Post HERE [click]

 

Visit Fran’s Cancer Schmancer Website [click]

 

 

What’s YOUR risk?  Calculate your risk of cancer & create your own cancer prevention profile by clicking on this link:

 

“Personal Risk Check” [click]

 

 

Remember, also:  early detection is key!!

 

“Cancer Screening Guidelines” [click]

 

 

 

Smoking remains the most preventable cause of death in America – half of the people who continue to smoke will die from smoking-related diseases. Tobacco use is responsible for nearly one in five deaths. Secondhand smoke contains more than 4,000 substances, more than 50 of which are known or suspected cancer-causing chemicals.  Each year, about 3,000 nonsmoking adults die of lung cancer as a result of breathing secondhand smoke.  Children who breathe secondhand smoke are more likely to get ear infections, allergies, bronchitis, asthma, & pneumonia, & it can also lead to sudden infant death syndrome (SIDS); plus, since their bodies are still growing, the chemicals in smoke (& its’ residue - left on clothing & surfaces) are even more dangerous to them.

 

Read More about “Tobacco & Cancer” [click]

 

ASPIRE (A Smoking Prevention Interactive Experience) to Quit  [click]

 

 

Okay, now for some more-FUN cancer prevention:

 

Take a trip through the Good Living Mall [click]

 

 

 

Learn More About Cancer Prevention:

 

American Institute for Cancer Research

 

M.D. Anderson Cancer Center

 

World Cancer Research Fund International

 

 

PS  On the day after I posted this, I found out that Fran Drescher was on the t.v. show “The Doctors” (MAN she’s really crossing my path lately, for some reason… can’t say that I’d really run across her too much for years, before this [not that she wasn’t out there, I’m a bit out of the celeb-watching-loop LOL]); but I thought I’d throw in this link to the synopsis of that show, a minute, since it all relates.

 

Read about Fran Drescher’s appearance on “The Doctors” [click]

(Video, etc. also available, there.)

 

 

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February 24^th is…

 

IHOP’s “National Pancake Day”

 

 

 

 

IHOP began this celebration in 2006, to coincide with “Fat Tuesday” (Mardi Gras) – AKA “Shrove Tuesday” – a time when people prepared for fasting during Lent (when rules prohibit the eating of all dairy products), so pancakes were made to use up the supply of eggs, milk, butter… which is why it’s also been called “Pancake Tuesday” over the years.  IHOP offers FREE pancake “short stacks” from 7am – 10pm, during the day.  They suggest that everyone make a donation which is equal or greater than the usual price of the cakes to Children’s Miracle Network, on that day.  In 2008, IHOP gave away more than 1.5 million pancakes and raised over $875,000 on National Pancake Day.

 

 

Visit the IHOP Pancake Day Website [click]

 

 

 

 

Visit the Children’s Miracle Network Website [click]

 

 

 

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Zonisamide (AKA Zonegran, etc.) Can Cause Metabolic Acidosis

 

 

The FDA is advising that treatment with zonisamide (an adjunct therapy in treating partial seizures in adults with epilepsy), can cause metabolic acidosis in some patients.

 

Patients with certain predisposing conditions or various therapies might be at greater risk for developing metabolic acidosis; & the risk appears to be more frequent and severe in younger patients.

 

Having serum bicarbonate measured (by health professionals) before starting treatment & also periodically during treatment with zonisamide (even in the absence of symptoms), is recommended. 

 

The FDA is working with the makers of zonisamide to revise the product labeling to reflect the new safety information.

 

 

Read the Safety Summary on Zonisamide HERE [click]

 

 

 

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The FDA has issued an advisory for the psoriasis drug, Raptiva, due to several reports of a a rare brain infection (PML – a viral infection which attacks the central nervous system) in patients who were on it, including 3 deaths. 

 

 

Read full FDA Raptiva Advisory HERE [click]

 

 

 

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Please read the previous Care-Aware post (posted under the “Holiday/Event DAYS” category), or just click on the link below:

 

International Childhood Cancer Awareness Day (Feb. 15th)

 

 

NOTE: If you are subscribed only to email update notices or RSS feeds from the “Childhood (Pediatric) Cancer” category, you might consider expanding those, as I may not always manage to double-post things into cross-referenced categories (& Spaces only allows posting under only 1 category at a time).  Otherwise you may miss such things as the recent post for “National Donor Day”, which applies to multiple illness categories, including Childhood Cancers... or other posts like this one which are posted beneath specific DAY/WEEK/MONTH Event categories.

 

 

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February 15^th is…

 

International Childhood Cancer Awareness Day

The Month of February is National Cancer Prevention Month

 

 

 

International Childhood Cancer Awareness Day (ICCD) has been observed each February 15^th since 2002.  Over 65 countries worldwide now participate in the event.

 

 

• 250,000 children in the world get cancer each year!

 

• Each year, more than 160,000 children die of cancer, worldwide!

 

 

Approximately 75-80% of children who have cancer who live in high income countries (like ours) can expect to survive.  As I’ve written in previous posts, although those numbers may seem fairly high at a glance, it still means that 1 in 4 will die within just the first 5 years after diagnosis, & odds plummet with relapses & are much lower for certain of the childhood cancer types.  When you watch even one child suffer or die – whether that’s your own or one you’ve come to care about from afar… just ANY child, anywhere… I can tell you it’s one too many.  Over just the past few years I’ve been a witness to the suffering & deaths of scores of children due to childhood cancers.

 

 

Now flip those statistics around.  As heart-wrenching as the situation is in our country, already, when we widen our view to include the global picture, it gets enormously more desperate.  In low income countries the statistics are basically reversed; and (while survival rates vary considerably) typically more than 80% of young cancer victims die.  Adding to their suffering, essential palliative care for these children and their families barely exists in these countries.  Because 4 out of 5 children live in developing countries, they do not get access to diagnosis and treatment which could prevent 100,000 of these children dying, each year.

 

 

Brain tumors are now considered to be the greatest cause of childhood cancer mortality in the age group 0-14, in a number of countries.  The International Brain Tumour Alliance (IBTA) & the International Union Against Cancer (UICC) have issued a joint statement ICCD, calling for greater attention to be given to childhood brain tumors.

 

Read the IBTA/UICC Brain Tumor Press Statement HERE [click]

 

 

One example of the global childhood cancer situation played out in the last summer Olympics:  Olympic gymnast Oksana Chusovitina had to move from Russia to Germany in order to get adequate treatment for her son, when he was diagnosed with leukemia.  Once there (yet uninsured) a village of support rose up to champion funding for the treatment to help save him. She continued on in the sport in order to keep her son alive.

 

 

Read More about Oksana Chusovitina & her son Alisher HERE [click]

 

 

What does the face of childhood cancer look like to children who have it?  We have the opportunity to get a glimpse into it via the photos submitted by children around the world for a poster project.  Click on the link below to view 80 different photo-posters from children with cancers from various countries.  The 2005 theme was children at their hospitals.

 

View ICCCPO’s “Through My Eyes” Posters, 2005 [click]

 

 

The aim of the IPCAD is to help children with cancer get the best possible treatment and care, no matter where they live in the world, by raising both awareness and money. 

  

Sources: WCCF; FCC; Luecan; NBC Olympics; CureSearch; UICC; IBTA

           

 

 

For More Information, Visit:

 

The International Confederation of Childhood Cancer Parent Organisations (ICCCPO)

 

International Society of Paediatric Oncology (SIOP)

 

My Child Matters

A Program of the International Union Against Cancer (UICC)

 

St. Jude’s International Outreach Program

 

World Child Cancer Foundation (WCCF)

 

 

 

 

Awareness is an essential element for this critical health issue & all others:

 

• Better funding accelerates research exponentially – shortening the time it takes to bring new discoveries forward.

 

• Research, itself, brings better treatments & care, prevention, & the hope for a cure.

 

• Awareness brings more attention to the issues… which brings in more funding for research.

 

Support awareness!!

 

 

“Go for the Gold - Champion the CURE for Childhood Cancers!”

(Click for more on this previous/continuing Care-Aware series.)

 

Sign the Petition to Cure Childhood Cancers! [click]

 

Join in with PAC2 [click]

(Grassroots awareness movement for Childhood Cancers.)

Care-Aware is a member!

 

 

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Valentine’s Day - February 14^th – is a Day for Hearts …

 

 

Congenital Heart Defects Awareness DAY

This is also CHD Awareness WEEK

The Month of February is American Heart Month & Heart Month

 

 

 

Congenital Heart Defects (CHD’s) are the most common birth defect in the United States, & are the leading cause of death during the first year of life.

 

 

• Nine of every 1,000 babies – 36,000 babies each year – are born with heart defects, in the US.  Though research is ongoing, at least 35 defects have now been identified.

 

• Cardiovascular disease is the 2^nd leading cause of death for children under the age of 15; & CHD’s, alone, cause about 3,600 deaths each year.

 

• Over 25,000 cardiovascular operations were performed on people age 20 or younger in just the year 2003.

 

• There were more than 139,000 hospitalizations of infants & children for a congenital cardiovascular defect, according to Statistics from 2004; & hospital charges for them added up to $2.6 billion dollars.

 

• Up to 1.3 million Americans have a congenital heart disease.

 

In most cases, scientists do not know what causes hearts to develop abnormally; but genetic & environmental factors appear to play roles; & they’ve identified about 10 gene mutations (changes) which can cause isolated specific heart defects.  Various infections or viruses (such as rubella [German measles] of influenza [flu]) contracted by the mother during pregnancy may contribute, as well as exposures to some industrial chemicals (solvents); & some studies suggest that things like drinking alcohol or using cocaine in pregnancy may increase the risk.  Certain medications are also known to increase the risks, such as Accutane (isotretinoin), Thalidomide, certain anti-seizure medications, trimethoprim-sulfonamide (a combination of antibiotics).  Heart defects can along with chromosomal abnormalities like Down syndrome & Turner syndrome; & they’re also common in children with a variety of inherited disorders, including Noonan syndrome, velocardiofacial syndrome, Holt-Oram syndrome and Alagille syndrome.  Certain chronic illnesses in the mother, such as diabetes (when not well-controlled), may contribute to heart defects, as well.

 

CHD’s aren’t just a childhood condition; for people who are born with a CHD, it is a chronic disease state which has a lifelong impact on them.

 

 

Although some babies will be diagnosed during gestation or at birth, a diagnosis is sometimes not made until days, weeks, months, or even years later. In some cases, a CHD may not be detected until adolescence or adulthood.

 

 

The earlier CHD is detected and treated, the more likely it is that the affected child will survive and have fewer long-term health complications; so early-detection is imperative.  Exciting new possibilities exist, such as mending hearts with skin cells [click to read article] on the horizon.  More funding is needed to prevent CHD's, save lives, & find treatments/cures!

 

 

Sources: It’s My Heart; Mended Little Hearts; Saving Little Hearts; March of Dimes; Am. Heart Assoc. 

  

 

 

 

Learn More about CHD’s:

 

It’s My Heart

 

Mended Little Hearts

 

Saving Little Hearts

 

 

 

NEW Care-Aware™ List Added:  As I mentioned in the CHD Awareness WEEK post, an extensive list of CHD links & resources is now available on the left-hand side of the main page, here at Care-Aware. 

 

 

See children with CHD’s on this previous Care-Aware post: Congenital Heart Defects Awareness WEEK.

 

 

 

REMINDER:  Valentine’s Day is also National Donor Day.  Heart transplants are sometimes needed by those who’ve been born with congenital heart defects.  Blood is needed during surgeries...  Please read the Care-Aware post for that, as well.

 

 

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 Valentine’s Day - February 14^th – is also…

 

 

National Condom DAY

It’s also National Condom WEEK

The Month of February is National Condom MONTH

 

 

 

I was not aware (‘til just recently… that there was a “Nat’l Condom Day/Week/Month”) – were you??

 

 

• There are about 19 million new cases of sexually transmitted infections (STI) each year, in the US.

 

• Young people – ages 15-24 – account for approximately half of all of those STI’s.

 

• STIs often have no noticeable symptoms; but, if untreated, can cause a host of medical complications, including infertility.

 

• The risk of contracting infections like HIV, chlamydia, and gonorrhea is greatly reduced with consistent and correct condom use.

 

• Young women’s risk of acquiring HPV is cut significantly when their male partners use condoms regularly.

 

 

How much do you know about condoms?  No, don’t tell ME… just go and…

 

 

Take the Condom Quiz [click]

 

 

Yep – there’s a quiz! You can also find a “condom animation video”, a how-to (on male AND female condoms), & tips on how to talk with your partner about condoms and safer sex at that same “Condom Quiz” link, above (just scroll up a bit from where the quiz box is). 

 

 

The advice:  Plan ahead to be safe.  (Visit the ASHA website [below] for more advice.)

   

Source: ASHA

 

 

For more information, visit:

 

American Social Health Association (ASHA)

 

ASHA’s Teen Sites:

I Wanna Know (Engl.) Quiero Sabar (Span.)

  

 

 

This week (Feb 9-15, ’09) is also… Contraceptive Awareness Week in the UK & next week (Feb. 14-21) is Sexual Health Awareness Week in Australia. 

 

 

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Valentine’s Day - February 14^th – is also…

 

National Donor Day

 

 

 

• Almost 95,000 people are in need of an organ for transplant; & about 19 patients die every day due to a shortage of donors – over 7,000 a year.  Meanwhile, viable organs which could stop them from dying are simply not being donated.

 

• Approximately 38,000 children and adults in America have life-threatening blood diseases that could be treated by a marrow/blood, stem cell or cord blood transplant.  Because tissue type is most likely to match someone of the same race and ethnicity, patients of racially and ethnically diverse backgrounds are finding matches less often; & more donors from these groups, especially, are needed.

 

• Every two seconds someone in the US needs blood – more than 39,000 units each day.  Each day blood transfusions save approximately 10,000 lives in America.  Although 60 percent of Americans are eligible to donate blood, only five percent do so!  Blood shortages abound.

 

 

I’ve gotten to know a TON of people, just over the past several years, who’ve needed all sorts of organ, marrow/blood, stem cell, cord blood, or tissue donations. 

 

Children who are going through chemotherapy frequently may require platelet transfusions (from blood products), & also marrow, stem cell or cord blood transplants.  I’ve come to know & love scores of them - & these blood products & marrow, etc. are a big part of what help get them through what can be a long & challenging process, to say the least.  Victoria C. also had a stem cell/bone marrow transplant, but for scleroderma/sclerosis.  People with Aplastic Anemia (of whom I know several, including teenager Robbie R.) may need blood products or, in severe cases, a bone marrow transplant.  Sickle cell anemia’s another illness which may require those things.

 

My friend Shelley’s new grandson will need a kidney transplant (once he gets big enough).  I know of a mother with lupus who’s needed two separate kidney transplants, over the years, to stay alive.  Another dear lady/friend, Glenda J. (luv her – caring, humorous, inspiring, pretty & positive)… we’re hoping that she’ll get her new liver soon – it’s been such a long wait (months & months… years?)!!  Then there’s Joe W., 51, a husband & father of 2 who both has cancer and needed a liver transplant (which he recently received.  June, who nearly died before her liver transplant, & is now back in school learning a new career in her 50’s (GO June); & Dennis W. is grateful for his new liver, as well.  Cindy L. got a new liver several years ago, but now needs a kidney  (hers went into failure during the liver transplant).  Little Tyler N. & Lizzy Q. have both had liver and small bowel transplants.  Jayne Z., who’s 18, is waiting for a liver transplant (& docs have told her that – without a miracle – they expect her to be waiting at least a year).

 

I know a number of children who’ve had heart transplants, & are alive today because of them.  Megan M. – whose heart was attacked by a virus when she was a baby) has gone on to be an inspiration to so many, already (she just turned 7 years old, recently); & Alexis – whose mom, Suzanne, is now a coordinator for Mended Little Hearts; & there was Noah S. (whose mom, Corrie, is part of It's My Heart) & Graham B., & SO many more.  Then there's John B., a young man in his twenties, who – although he had a relatively short time with his new heart (& left us due to other complications/infections) – made a profound impact on my own heart & others’… which I expect will continue for many decades to come. 

 

Then there’s Gracyn DB – what a beautiful reflection of heaven’s own light she is!!  Gracyn is 9 years old & currently being kept alive with a Berlin pump while awaiting her new heart.  Cute little Cat (who was diagnoses with Familial Primary Pulmonary Hypertension, several years ago) is 7 years old & needs a new heart and lungs.  David McFarland, a pastor in Ireland who has been assessed for a heart transplant, ministers to others with heart illnesses, while waiting for his second heart.

 

 

Those are just a few of the children & adults that I’ve run across in just the past few years.  There are SO many more out there!!

 

 

 

A Care-Aware reader (Dave [thanks!]) left a message under the “National Donor Sabbath” post (back in Nov.) regarding organ donations.  Apparently, there is now an organization called “LifeSharers” - a non-profit national network of organ donors which is hoping to help deal with the organ donation shortage by providing an incentive to people for becoming registered organ donors.  The incentive? – members (membership is free) of theirs are given access to organs they otherwise wouldn’t have:  those of others who are also registered organ donors (no one is excluded due to any pre-existing medical condition or age).  In other words, people who are already willing organ donors get access to organs from others who are as well; which increases their odds of getting an organ when they need one.

 

 Visit LifeSharers for More Info. [click]

(Or call 1-888-ORGAN-88.)

 

Get a LifeSharers Banner/Badge for your Website/Blog [click]

(I added one to the Care-Aware™ home page. )

 

 

I noticed a statement from Dr. Mehmet Oz on their website.  He says, “LifeSavers is an innovative approach that helps each of us save lives."  John Stossel has a comment there, as well:  “There ought to be a free market in organs, but since that’s illegal, LifeSharers is the next best thing.  It’s criminal that dozens of people die every day waiting for organs.”  There are numerous medical, legal & financial experts as well as ethicists whose comments can be read on the website, as well.

 

 

 

Valentine's Day is the day of love and donation is the gift of life.    What more-loving gesture could there be than making this the day when you make a decision to donate?!  Give LIFE:  Give blood (it’s RED – great for Valentine’s Day!), & sign up to be a registered organ donor (visit Donate Life America to learn your state’s protocol for that) & LifeSharers member… & while you’re at it, get added into the bone marrow registry, as well! :)

 

 

REMINDER:  You still have a shot at winning that stay at a resort in Florida.  Go to the Care-Aware post, “Save a Life AND Get a Chance to Win Great Prizes! - Blood Drive Contest” for more info. on that.  The contest is open until the end of February, 2009.   

 

 

Sources: OrganDonor.Gov, National Transplant Society, & American Red Cross

   

 

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Shigella & Norovirus Outbreaks – Pennsylvania, USA  (& Elsewhere)

 

 

Well, if it’s not the peanut products (& salmonella)… then you might be sick from either shigella or norovirus!

 

 

It’s being reported that the state of Pennsylvania has been experiencing a high number of both shigella & norovirus cases over the past five months.

 

 

Where they might usually have 10 cases in a year, they’ve now seen nearly 200 in just that 5-month span.  One entire school was shut down, this past Friday, due to all of the cases of norovirus there.

 

 

Both illnesses spread easily from person to person & cause symptoms such as diarrhea, fever, stomach pain &/or cramping, nausea and vomiting.  The difference? – shigella (shigellosis) is an bacterial intestinal infection, while norovirus is a gastrointestinal virus.

 

 

Best prevention for BOTH:  Proper HANDWASHING!!

 

 

Recommended prevention also includes keeping children with diarrhea home (& also refraining from swimming at pools or water parks) until it has stopped for 24 hours, supervising children’s hand-washing, disinfecting food-prep, bathroom & diaper changing areas (using bleach-based household cleaners), not-preparing foods for others while you’re ill, & eliminating water activities at day care centers.  You should also remove and wash clothing or linens that may have been contaminated after an episode of illness (use hot water and soap).

 

 

Other recent US outbreaks of shigella have included: Muskegon County, Michigan; Alamosa, Colorado; Montgomery County, Ohio; & parts of New York state, Iowa, Arkansas, Indiana, Illinois, South Dakota & Texas, amongst other places – just over the past year.  Certain states, such as Colorado, have also seen cases of norovirus double in the past year.  Norovirus also became well-known for its’ incidences on cruise ships; & nursing homes have had to be quarantined because of it, as well.  Incidents have also been seen in Australia & Taiwan, recently.  Each year, throughout the world, nearly almost two million children die every year from severe/dehydrating diarrhea - half of which are due to Shigella and common E. coli.  Millions more are hospitalized from it.

 

 

There are about 25,000 confirmed cases of shigellosis recorded each year America; but many experts believe that the true number of actual cases is closer to half a million each year, with no slow-down in sight.  Restaurants, fast food places, nursing homes & daycare centers are particularly hospitable to its’ spread, as shigella can be spread via people, food, & fecal matter - & can remain infectious for up to two weeks after the person is sick. 

 

 

Again – practice good hand hygiene:

 

 

Studies show that regular hand-washing greatly reduces your chances of contracting the influenza virus’ (AKA flu’s), as well.  It’s recommended that we should all wash our hands once every one to two hours – especially throughout the flu season (which is now).

 

 

For more information, go to:

 

“What is Shigella?”

(on The Shigella Blog)

 

 

“Norovirus: Q & A”

(by the CDC)

 

 

Sources: MSNBC, Shigella Blog, NBC Philadelphia, CBS4Denver & the CDC

 

 

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The second week of February

            (8^th – 14^th, ‘09)

 

                  is…

 

 

Cardiovascular Professionals Week

Alliance of Cardiovascular Professionals

 

 

Children of Alcoholics Week

National Association for Children of Alcoholics

 

 

Congenital Heart Defects Awareness Week™ (7^th – 14^th)

(Read the Care-Aware™ Post on CHD Awareness Week)

 

 

Duchenne Dystrophy Awareness Week

Parent Project Muscular Dystrophy

 

 

National Cardiac Rehabilitation Week

Am. Assoc. of Cardiovascular & Pulmonary Rehabilitation

 

 

National Heart Failure Awareness Week

Heart Failure Society of America

 

 

Random Acts of Kindness Week

The Random Acts of Kindness Foundation

 

 

                  

 

 [NOTE: Purple words are linked to sites – just click to visit.]

 

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This week – February 7^th-14^th – is…

 

 

Congenital Heart Defects Awareness Week™

Congenital Heart Defects Awareness DAY is Feb. 14^th

^{The Month of February is American Heart Month & Heart Month}

 

 

 

Congenital Heart Defects/Disease (CHD) is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide – affecting millions of families… & approximately 40,000 babies each year in the United States alone.

 

 

CHD Awareness Week™ is sponsored by the Congenital Heart Information Network, whose hope is that the increased public awareness will bring in additional funding for support and educational services, scientific research, and improved quality of care for all of the children, adults & families who are affected by CHD.,  as the current funding is “relatively small” (less than other health issues which are horribly-underfunded, as well, even – I just found out).

 

Source: TCHIN  

 

Here’s Zachary, a little boy I've gotten to know, with a message about CHD awareness for you:

 

 

 

 

Isn’t he majorly-cute?!  Luv him. 

 

 

And here are some more of the many faces of those who have CHD’s (I know several of the children in here, as well… some of whom have died all-too-soon), with a bit more CHD awareness:

 

 

 

 

 

NEW Care-Aware™ List Added:  I’ve added an extensive list of CHD links & resources on the left-hand side of the main page, here; so please check that out & visit the sites for more information.  (You can also just Click HERE to view that full "HEART: CHD" links & resources list on a separate page.)

 

 

 

For More On Congenital Heart Defects Awareness Week™:

 

Visit The Congenital Heart Information Network (TCHIN) [click]

 

 

 

REMINDER:  Valentine’s Day is also “A Day for Hearts” – CHD Awareness Day AND National Donor Day.

 

 

UPDATE:  A Care-Aware post on Feb 14th's CHD Awareness DAY is now also available:

 

View Congenital Heart Defects Awareness DAY [click]

  

 

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Health Awareness DAYS

               in the

   Month of FEBRUARY

 

 

                            

 

 

3^rd

National Patient Recognition Day

 

 

4^th

World Cancer Day

 

 

6^th

Give Kids a Smile Day

 

 

6^th

National Wear Red Day

 

 

6^th

National Women’s Healthy Heart Campaign

 

 

12^th

Sexual & Reproductive Awareness Day (CND)

 

 

14^th

Congenital Heart Defects Awareness DAY

 

 

14^th

National Condom Day

 

 

14^th

National Donor Day

 

 

15^th

International Pediatric Cancer Awareness Day

 

 

28^th

Repetitive Strain Injury Awareness Day

 

 

                            

 

 

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Friday – February 6^th, 2009 – is…

 

 

Give Kids A Smile Day

February is Nat’l Children’s Dental Health Month

 

 

Each year on the first Friday in February, thousands of the nation's dentists (& their dental-team members) provide free oral health care services to children from low-income families across the USA.

 

 

The Give Kids A Smile® program – sponsored by the American Dental Association (ADA) – enhances the oral health of large numbers of needy children.  Give Kids A Smile activities also highlight the ongoing challenges that low-income families face in finding dental care so that policy makers are aware of them.

 

Find a program today! [click]

 

 

You can give your kids a smile in a bunch of other ways which help to celebrate both Give Kids A Smile Day & Nat’l Children’s Dental Health Month, as well.   Just click on the links below to get your FREE activities:

 

Smile Power Calendar

(Fun way for kids to keep track of brushing.)

 

Turn Up Your Smile Power Coloring Sheet

(Color “Smile Power’s” Tough Tooth Team characters.)

 

Find the Differences

(Compare two pics of the Tough Tooth Team at work.)

 

Connect the Dots

(…to discover what “Bugsy Bacteria” looks like.)

 

Connect 4 Game

(Extra points for squares with teeth!)

 

Secret Message Code

(Turn the symbols back into letters to read your message.)

 

Crossword Puzzle

(Fill in words using the dental-themed hints.)

 

Sudoku Puzzles

(A Tough Tooth Team character hosts two different puzzles.)

 

Word Scramble

(Twenty dental health words to straighten out.)

   

 

 Source: ADA/GKAS

 

 

Visit the Give Kids A Smile Website

 

 

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