By Leslie Vandever
Participants in the ALS Association’s Ice Bucket Challenge have included children, adults from all walks of life, Hollywood stars, and prominent politicians.
ALS is a progressive neurodegenerative disease. It affects nerve cells in the brain and the spinal cord that affect voluntary movement by disrupting and eventually destroying the motor neurons that send signals to muscles throughout the body. As the motor neurons die, the brain’s ability to initiate and control voluntary movement is lost.
More than 12,000 people in the United States have ALS; it’s one of the most common neuromuscular diseases worldwide and affects people of all races and ethnic backgrounds. It’s more common among non-Hispanics, white males, and people between the ages of 60 and 70, but people who are older or younger than that can get it too. Men seems to get ALS more frequently than women. Most cases of ALS—90-95 percent—occur apparently at random with no clearly associated risk factors. Five to 10 percent of cases to seem to be hereditary.
Early symptoms of ALS can be subtle. They frequently show up first in the hands, feet, arms, or legs, then spread to other parts of the body. Symptoms may include:
As the disease progresses, the body’s muscles become weaker and weaker. In time, ALS affects speaking, chewing, swallowing, and even breathing. In the later stages of the disease, ALS may cause total paralysis.
Although ALS is always fatal at this point, there is hope. Scientific medical research has produced treatments that can slow the progression of the disease and improve some symptoms. Riluzole is the first drug approved by the FDA for use in treating ALS. It can’t reverse damage already done to motor neurons by the disease, but it does reduce new damage. Studies have shown that it can prolong survival for several months, and some patients survived longer without needing ventilation support.
Non-drug therapy is also an important way to treat ALS. It includes:
Caring for an ALS patient can be difficult and challenging. But there are many ways to soothe and relieve some of the disease’s symptoms and help improve the patient’s quality of life. They include (among many others) encouraging the patient to eat, giving medications on schedule, massaging cramped and painful muscles, ensuring regular doctor visits, controlling the stress levels in the home, and providing pleasant distraction from symptoms.
For more information about ALS and other health-related subjects, click here.
The round pendant crafted in scratch-resistant tungsten carbide is brilliantly beveled to reflect light, illuminating the contours of its unique design.
The rotating bail allows the pendant to spin a full 360° atop a decorative bead detail. The highly-polished jewelry finish comes in three distinct colors Silver Tungsten, Onyx, and Rose Gold. A strong, but lightweight titanium cable chain is available in 20” and 24” lengths.
The medical emblem is laser engraved providing a subtle, yet easy to recognize medical alert symbol. The back of the pendant offers a full six lines for personalized engraving of medical conditions, allergies, emergency contacts or more.
What is Gaucher disease?
Named after French doctor Philippe Gaucher, who first described the symptoms in 1882, Gaucher disease is a lysosomal storage disorder. That means the body is deficient in a certain type of enzyme. It is an inherited disease that is carried by as many as 1 in 200 of the general population.
Diagnosis and Treatment:
Symptoms of the disease include bleeding and bone problems such as anemia, bruising easily, nosebleeds, osteoporosis, easily broken bones, and swollen belly due to enlarged liver and spleen.
How can I help?
Although Gaucher is a rare disease, the foundation recognizes that many more people may be carriers of the gene than affected by the illness. Because it is passed down to children, it’s important that potential carriers are informed about the disease.
Since much of the education about the disease involves the community, the National Gaucher Foundation has set up a month long virtual event on their website. Visitors to the site can play games, watch videos, view photos, read the new Gaucher comic book, and more.
New to their website is the first patient-centered national registry of Gaucher disease. Families can submit their personal experiences for a more realistic record of how different people are affected by the disease.
If you’re looking to get involved, consider speaking to your community about the disease, sharing your story of how you or your family were affected, or making a donation to the foundation, There is also a list of other ideas for promoting awareness of Gaucher during October.
People who wear medical IDs rely on EMS to confirm their medical condition and medical information before providing aid. We know that 75 percent of EMS look for medical IDs and we thank them. Here are some stats on EMS in the United States.
While the general mood associated with football is one of excitement, the sport can also present some dangers, especially if the players have asthma or allergies.
According to WebMD, some kids can have an anaphylactic reaction before or during exercise. Symptoms include a rash or itching, trouble breathing or a choking sensation, wheezing, nausea or a headache.
Anaphylaxis is a serious medical emergency in which you should call 9-1-1.
But it shouldn’t always come to that for student athletes with allergies and asthma. Most often, serious situations can be prevented with a little planning and diligence.
First is proper diagnosis. Consult an allergy specialist who can inform you about triggers in diet and environment to avoid. The doctor can also give guidelines for activity levels. Along with your child’s doctor, you can develop an allergy action plan. This is a written procedure of how to act in an emergency situation. That way there is no confusion if an emergency does happen.
Part of an action plan will be what medicines your child should carry with him/her at all times. These can be over the counter antihistamines or epinephrine shots. Another important part of the plan is to wear identification that informs teammates, coaches, and others about your child’s asthma or allergies.
Medical IDs come in bracelet and necklace styles in materials durable enough to wear during sports. If your child is playing a contact sport, check with the coach to find out what style would be least intrusive. The last thing you want is a medical ID that could cause an injury during a game. One idea is to purchase an ID that stays with the gym bag to be worn during practice and games.
Asthma and allergies are serious conditions, but they don’t have to prevent your child from participating in school sports. With a plan in place, you can rest assured while your child reaps the physical and mental benefits of participating in sports.
What are Leukemia & Lymphoma?
Leukemia & Lymphoma are cancers of the blood. Leukemia forms when tumors grow in the bone marrow, where blood cells are created. Lymphoma refers to a group of blood cancers that develop in the lymphatic system, which carries important fluids into the bloodstream.
There are an estimated 156,420 people in the United States diagnosed with leukemia, lymphoma or myeloma each year. Every three minutes one person in the U.S. is diagnosed with a blood cancer.
Diagnosis and Treatment
Symptoms of leukemia can resemble many other illnesses and include: anemia, easy bruising or bleeding, small red spots under skin (petechiae), fatigue and weakness. Symptoms of lymphoma are similar, but also include swollen lymph nodes. Blood tests are used to diagnose blood cancers. Treatments for blood cancers include radiation and chemotherapy, and stem cell transplants.
How can I help?
Blood cancers are devastating diseases that affect more than the person with the disease. The Leukemia and Lymphoma Society is the world’s health organization dedicated to blood cancer, and manages programs to research cures and treatments, provide current cancer patients with services to make their treatment easier, and advocate for public policy that protects cancer patients and their families.
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!