It’s mid-August: time to get ready to send the kids back to school!
For children who have a condition that warrants a medical ID, prepping for school involves a little more than buying new clothes and school supplies.
It might mean putting together an allergy action plan, an insulin administration schedule, or setting goals for handling learning disabilities. In any of those cases, back to school also means getting to know the school nurse. This month we’re featuring the National Association of School Nurses as a partner on our website. Here are a few things you maybe didn’t know about your child’s school nurse.
Each August since 1996, Families of Spinal Muscular Atrophy, a nonprofit organization, has hosted an awareness month for Spinal Muscular Atrophy to raise awareness about the disease.
What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy (SMA) describes diseases of motor neurons causing weakness and atrophy of muscles, usually in the arms, legs, neck, and those associated with breathing. Nerves that sense pain are not affected, neither are neurons associated with cognitive functions.
SMA is a rare disease affecting one in 6,000 to 10,000 people worldwide, and between one in 40 to 80 people carries the gene. Since SMA is inherited, each child born of parents who both carry the gene has a 25 percent chance of being born with SMA.
Diagnosis and Treatment:
There are at least four types of SMA with varying degrees of debilitation. Type 1, the most severe, is diagnosed upon birth. Infants are born with little muscle tone, little movement, lack of head control, and may have trouble breathing. Types 2-4 are milder, with weakness starting later in life. In type 4, muscle weakness onsets in adulthood. Unfortunately, there is no treatment for the weakness caused by SMA. Some people with the disease may need braces to help support their bodies and help breathing.
How can I help?
It can be devastating to families who receive a diagnosis of SMA. Families of Spinal Muscular Atrophy was established by several families who received a diagnosis, and needed a support group. They specialize in helping parents navigate the way through daily life with the disease. You can get involved with any of their events or make a donation directly to the organization.
Fight SMA is another nonprofit that was founded after a couple found out their son was diagnosed with SMA. Fight SMA focuses on funding research to find treatments for, ways to prevent, and a cure for the disease. You can make a donation to their efforts as well.
What is a DNR order?
A do-not-resuscitate order tells medical professionals that you do not want to receive CPR if your heart or lungs stop. Unlike other advanced directives that you can write yourself and have notarized, a DNR must be written by a doctor in your official medical chart. Requirements and instructions for the order vary by state.
When is it used?
DNR orders only pertain to stopping or preventing use of CPR, which can include mouth-to-mouth, breathing tubes, or electric shock to the heart. They don’t prevent the administration of pain medicine or first-aid.
Who can order it?
Your doctor writes a DNR order together with your consent. If you have named someone to speak for you, that person can consult with your doctor to write the orders. If you have not named anyone, and you are unable to speak for yourself, in some cases a loved one may agree to a DNR order on your behalf.
How do others know you have one?
You can, and should, tell your loved ones about your DNR instructions, and they can be included in your living will and any other documents that give instructions about your life. In the event of an emergency, you’ll want to carry instructions on your person so that emergency responders can abide by your wishes. DNR or Do Not Resuscitate can be engraved on your medical ID; however, there is no guarantee that an emergency responder will follow the DNR orders based solely on an ID engraving.
With a personal health record, you can upload your doctor’s official order so that emergency responders and other medical professionals can access it.
What if I change my mind?
If you decide you don’t want it, tell your doctor right away and remove it from any documents you keep personally. You always have the right to accept CPR, even if you have an existing DNR order.
Source: Medline Plus from the National Institutes of Health
Swim days, camping trips, family vacations, and of course, barbecues. The summer months bring with them lots of outdoor activities and opportunities to get together with family and friends.
When you have food allergies, these outings can present some challenges. Here are some things to keep in mind when enjoying that backyard barbecue if you or your child has food allergies.
Share with Care
Grills and smokers are great for family-style cooking, but they can lead to allergen-laden foods mixing with allergy-friendly foods. For partygoers with food allergies, this can be a big problem. Ask the cook to use separate platters and utensils to avoid cross-contamination.
While grilled meats like ribs and chicken are pretty straightforward, many other barbeque foods may have hidden food allergens. Marinades and sauces can contain nuts, soy, or other common food allergies. Even hamburgers are not as simple as they used to be. Cooks often use egg and breadcrumbs to hold patties together, or incorporate cheese into the burgers themselves. Side dishes like potato salad, macaroni and cheese, and pasta dishes can contain egg or milk products. If you’re worried about the allergens, ask the cook before eating.
BYOF (Bring your own food)
You can’t go wrong with supplying your own snacks. If the event is a potluck, bring a dish that is free of food allergens for everyone to enjoy. That way you or your child can eat safely and feel like part of the crowd, too.
Info on Hand
Even if you’re just down the street at a neighbor’s house, it’s important to keep your medication, medical ID, and an emergency action plan handy. Inform the party host of your allergies and how he or she can act in the event of an allergy attack. However you enjoy your summertime, remember to stay safe!
This June marks the fourteenth annual “Myasthenia Gravis Awareness Month,” a nationwide movement created by the Myasthenia Gravis Foundation of America, Inc. (MGFA) to raise awareness of the often misunderstood and under-diagnosed disease, Myasthenia Gravis (MG). MG strikes people of all ages, races, and genders and, while treatments are available to improve muscle strength, there is no known cure.
During the month of June, MGFA’s official “MG Awareness Month,” the national office, as well as chapters and individuals throughout the country, is involved in a variety of activities to promote awareness. These activities include obtaining proclamations from local and state officials, providing information about MG to the media, holding MG awareness events, disseminating information via social networks, and distributing MGFA’s “United For A Cure. A World Without MG” June Awareness Month poster. Several states and cities, including New York, Massachusetts, Nevada and most recently Connecticut, have issued proclamations, recognizing the month of June as Myasthenia Gravis Awareness Month!
Myasthenia gravis (MG) literally means “grave muscle weakness.” It is a serious, potentially life threatening, neuromuscular, autoimmune disease which causes severe weakness in the voluntary muscles of the body. MG strikes both children and adults, and can affect a person’s ability to see, speak, walk, smile, eat–and at its worst, even draw a breath. MG saps strength, can erode abilities and hopes, halt a career, and unravel the fabric of families.
Symptoms of MG can include:
What are the treatments for MG?
There is no known cure for MG, but there are effective treatments available. Common treatments include medications, thymectomy (surgical removal of the thymus gland) and plasmapheresis (plasma exchange). Spontaneous improvement and even remission may occur without specific therapy. Medications are most frequently used in treatment.
What is the prognosis for those with MG?
The current treatments for MG are sufficiently effective that the outlook for most patients is bright. Although the treatments will not cure MG, most patients will have improvement in their muscle strength. In some cases, MG may go into remission, during which no treatment is necessary. There is much that can be done, but still much to understand. New drugs to improve treatments are needed. Research plays an important role in finding new answers and treatments for MG.
For more information about Myasthenia Gravis, visit the MGFA website.
As myasthenia gravis progresses, sudden flare-ups can occur unexpectedly and often at awkward times. Wearing a medical ID bracelet or necklace can be a great benefit in explaining your situation to those around you and perhaps even save your life should you have a myasthenic crisis. There are certain drugs that patients with MG should avoid or only use with caution, such as neuromuscular relaxants which worsen the condition. In an emergency situation, first responders need to know that you have have MG in order to properly treat you and avoid the possibility of harming you further. Knowing that you are myasthenic at the onset will allow the emergency team to order the right tests and medication. Even if you are unable to talk at the time, wearing a medical ID can contain identify you as having myasthenis gravis and the medication you’re taking. The emergency team will be able to act swiftly and give you the proper treatment.
For more than 20 years, the Scleroderma Foundation, its chapters and support groups have recognized June as Scleroderma Awareness Month, marking it with annual awareness and fundraising events, as well as obtaining presidential, state and local proclamations. The Scleroderma Foundation has joined the Federation of European Scleroderma Associations (FESCA), and other international scleroderma organizations in recognizing June 29 as World Scleroderma Awareness Day.
Scleroderma is a chronic, often progressive, autoimmune disease in which the immune system attacks its own body. Once thought of as a rare condition, scleroderma is diagnosed in more people today than muscular dystrophy, multiple sclerosis, or cystic fibrosis.
Scleroderma means “hard skin.” It can cause a thickening and tightening of the skin. In some cases, it causes serious damage to internal organs including the lungs, heart, kidneys, esophagus and gastrointestinal tract. As scarring, or sclerosis, of these organs and organ systems progress, they work less effectively, and can lead to organ failure and death. Scleroderma is not contagious, infectious, cancerous or malignant.
How is scleroderma diagnosed?
The diagnostic process may require consultation with rheumatologists (arthritis specialists), and/or dermatologists (skin specialists) and require blood studies and numerous other specialized tests depending upon which organs are affected.
Who develops scleroderma, and when?
It’s estimated that about 300,000 Americans have scleroderma. About one third of those people have the systemic form of scleroderma. Since scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis is difficult. There may be many misdiagnosed or undiagnosed cases.
Localized scleroderma is more common in children, whereas systemic scleroderma is more common in adults. Overall, female patients outnumber male patients about 4-to-1. Although scleroderma is not directly inherited, some scientists feel there is a slight predisposition to it in families with a history of rheumatic diseases. However, scleroderma can develop in every age group from infants to the elderly, but its onset is most frequent between the ages of 25 to 55.
What is the treatment for scleroderma?
Currently, there is no cure for scleroderma, but there are many treatments available to help particular symptoms. For instance, heartburn can be controlled by medications called proton pump inhibitors PPIs) or medicine to improve the motion of the bowel. Some treatments are directed at decreasing the activity of the immune system. Some people with mild disease may not need medication at all and occasionally people can go off treatment when their scleroderma is no longer active. Because there is so much variation from one person to another, there is great variation in the treatments prescribed.
The Scleroderma Foundation has been fighting to spread awareness and help educate the public about this devastating disease for 15 years. Please join the fight and stand alongside them for June’s Scleroderma Awareness Month. Help them put an end to “sclero-what?” Here are just some ways you can help:
For more information on how you help, visit the Scleroderma Foundation Awareness Month website.
The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. It was formed January 1, 1998, by a merger between the West Coast-based United Scleroderma Foundation and the East Coast-based Scleroderma Federation. The national office is headquartered in Danvers, Mass. For more information about the Scleroderma Foundation please visit their website.
Source: Scleroderma Foundation
Father’s Day is just around the corner and you don’t know what to get him. Sure you don’t want to buy Dad another tie or money clip, but chances are you’re totally over-thinking this Father’s Day thing.
You want him to know you care. You want him to know that you appreciate all of the things he does. Most of all, you want him to be safe in an emergency because you’d like to keep him around for a long time to come. So don’t over-think it, get the father in your life a new medical ID bracelet or pendant and provide him with just a bit of the security and peace of mind he has given you over the years.
Check out our Lynx collection of medical ID bracelets for Dad:
Or go with the tried and true dog tag medical ID necklace that all men are happy to wear:
“My father gave me the greatest gift anyone could give another person, he believed in me.”
- Jim Valvano
Seventy-five years ago, baseball hall-of-famer, Lou Gehrig, gave an emotional farewell speech to the sport due to his battle with amyotrophic lateral sclerosis (ALS). While he lost his battle shortly after, the fight to end ALS continues. Great advancements are being made worldwide every day, not only through research, but by the people living with ALS, their families, and friends who are directly impacting the pace at which we move toward developing a treatment for people with ALS today.
There are roughly 30,000 people in the US living with ALS, also known as Lou Gehrig’s disease. This means every 90 minutes, someone is diagnosed with this progressive neurodegenerative disease that causes muscle weakness, paralysis, and respiratory failure. It affects people of all ages, races, and ethnicities. About 10% have a genetic form of the disease, while the majority of people live with a form of the disease that has no known cause. There is no cure or effective treatment for ALS.
Although ALS was first discovered by neurologist Jean-Martin Charcot, MD, in 1865, it wasn’t until baseball great, Lou Gehrig, was diagnosed with the disease in 1939 that ALS became well-known. A baseball hall-of-famer who played for the New York Yankees from 1923-1939, Gehrig left the game due to the progression of his disease. On July 4, 1939, he gave his farewell speech to the game, calling himself “the luckiest man on the face of the earth.” It has been credited as one of the most emotional moments in American sports history. This year, 2014, marks the 75th anniversary of his farewell speech.
The ALS Therapy Development Institute and Major League Baseball is once again partnering to raise awareness and funding for ALS in honor of famed baseball player Lou Gehrig. Collaborating organizations include the ALS Association, Muscular Dystrophy Association, Project ALS and ALS TDI. Beginning in May, ALS Awareness month, and culminating in festivities during July 4th games in ballparks around the country, this initiative will show we can win the battle against ALS. Be sure to check your local club for a schedule of events and more information at www.mlb.com/4als
On July 4, 1939, the New York Yankees held “Lou Gehrig Day” at Yankee Stadium. Gehrig had been diagnosed with ALS just two weeks earlier. With more than 62,000 fans in attendance, the Iron Horse took the microphone for what would become one of the most memorable moments in baseball history.
At the close of Gehrig’s emotional speech, Babe Ruth walked up, put his arm around his former teammate and spoke in his ear the first words they had shared since 1934. Gehrig was elected to the Hall of Fame that December. He died in 1941, at age 37.
“Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth. I have been in ballparks for seventeen years and have never received anything but kindness and encouragement from you fans. Look at these grand men. Which of you wouldn’t consider it the highlight of his career just to associate with them for even one day?
Sure I’m lucky. Who wouldn’t consider it an honor to have known Jacob Ruppert? Also, the builder of baseball’s greatest empire, Ed Barrow? To have spent six years with that wonderful little fellow, Miller Huggins? Then to have spent the next nine years with that outstanding leader, that smart student of psychology, the best manager in baseball today, Joe McCarthy?
Sure I’m lucky. When the New York Giants, a team you would give your right arm to beat, and vice versa, sends you a gift — that’s something. When everybody down to the groundskeepers and those boys in white coats remember you with trophies — that’s something. When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter — that’s something. When you have a father and a mother who work all their lives so you can have an education and build your body — it’s a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed — that’s the finest I know.
So I close in saying that I may have had a tough break, but I have an awful lot to live for.”
ALS Awareness Month is a campaign to spread awareness of and to raise funds for research for a cure for ALS (amyotrophic lateral sclerosis). In the United States, the campaign is observed every year in the month of May. In Canada, June has been declared as ALS Awareness Month by the Canadian Minister of Health.
Seventy-five years ago, baseball hall-of-famer, Lou Gehrig, gave an emotional farewell speech to the sport due to his battle with ALS. While he lost his battle shortly after, the fight to end ALS continues. Great advancements are being made worldwide every day, not only through research, but by the people living with ALS, their families, and friends who are directly impacting the pace at which we move toward developing a treatment for people with ALS today.
ALS, also known as Lou Gehrig’s disease, Charcot’s disease, and motor neuron disease (MND), attacks certain cells in the brain and spinal cord needed to keep our muscles moving. It is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. Early signs and symptoms of ALS include:
There is no single diagnostic test for ALS. Instead, the disease is diagnosed by ruling out other muscle and nerve disorders using a variety of tests. here is no single diagnostic tool for ALS. A series of clinical procedures are conducted to rule out neurological conditions whose symptoms closely resemble the disease. In the US, the diagnosis can take about 12 to 14 months. Researchers hope to expedite this process by developing tools that indicate whether people have the disease.
Most people with ALS live 2-5 years after their first signs of disease. About 10% of people with ALS survive at least 10 years. This variable rate of disease progression makes prognosis difficult to predict and therapies challenging to develop.
There is no cure or effective treatment for ALS, however scientists are working hard to develop therapies for this disease. Currently, there is only a single medicine for specifically treating ALS - riluzole. The drug, marketed by Sanofi-Aventis under the name Rilutek, extends survival only about 2 to 3 months.
This urgent unmet medical need for effective treatments for this devastating and fatal disease is the basis for the research and drug development effort at the nonprofit biotech organization, ALS Therapy Development Institute (ALS TDI).
Become an advocate. An ALS Association Advocate is someone who is passionate about getting involved with government at all levels to draw awareness and resources to the people affected by this disease. and willing step outside of their comfort zone to effect real change in the way our government responds to the needs of the ALS community. Click here to find out more about how to become an advocate.
Raise funds. There are fundraising events held throughout the year in the US and Canada to raise money for ALS research in both the US and Canada, including walks, runs, swims, golf tournaments and more. There’s a great U.S. list to get you started on ALS – Be Aware website, as well as on the ALS Association U.S. and ALS Canada websites, and the ALS TDI website. Many more can be found by searching the web.
Donate. Donations to worthy nonprofits like ALS TDI and the ALS Associations help in a number of ways. Your gifts help provide local services to people with ALS, global research to find a cure and advocacy efforts to raise awareness of this devastating disease. Simply visit their websites for information on how to donate.
Since 1949, Mental Health Awareness Month has been observed in May by reaching millions of people in the United States through the media, local events, and screenings. The purpose of Mental Health Month is to raise awareness about mental illnesses, and to educate communities about psychological disorders, while reducing the stigma that surrounds them. While Alzheimer’s Disease and other dementia are not typically the first things that come to mind while discussing Mental Health Month, they are very much a part of it.
Alzheimer’s Disease (AD) is the most common cause of dementia in older people. A dementia is a medical condition that disrupts the way the brain works. AD affects the parts of the brain that control thought, memory, and language. Although the risk of getting the disease increases with age, it is not a normal part of aging. At present the cause of the disease is unknown and there is no cure.
AD is named after Dr. Alois Alzheimer, a German psychiatrist. In 1906, Dr. Alzheimer described changes in the brain tissue of a woman who had died of an unusual mental illness. He found abnormal deposits (now called senile or neuritic plaques) and tangled bundles of nerve fibers (now called neurofibrillary tangles). These plaques and tangles in the brain have come to be characteristic brain changes due to AD.
It is estimated that currently 4 million people in the United States may have Alzheimer’s disease. The disease usually begins after age 65 and risk of AD goes up with age. While younger people may have AD, it is much less common. About 3% of men and women ages 65-74 have AD and nearly half of those over age 85 could have the disease.
Six in 10 people with dementia will wander. Anyone who has memory problems and is able to walk is at risk for wandering. Even in the early stages of dementia, a person can become disoriented or confused for a period of time. Coupled with memory loss and confusion, wandering puts people with Alzheimer’s and other dementia at higher risk of getting lost or injured. Individuals with dementia who wander are also at higher risk of accidental death, likely due to the lack of recognition of harmful situations and delays in seeking medical attention. A person with Alzheimer’s may not even remember his or her name or address. It’s important to plan ahead for this type of situation. A medical ID bracelet can provide succinct information about individuals with dementia if they become lost or injured.
Prepare yourself or your loved one by having a medical ID bracelet that will let the first responders and medical staff know who to call and how to make the appropriate medical decisions that can save a life. A medical ID can make a huge difference during an emergency situation or wandering event.