Featured Condition/Disease: Muscular Dystrophy

We are featuring a childhood/infant disease or condition informational post every other Friday.  Today's topic is Muscular Dystrophy.

Definition

Muscular Dystrophy (MD) is a degenerative disease in which the muscles of the body get weaker and weaker and slowly stop working. Degenerative means the condition worsens slowly over time. Your child's muscles need many different kinds of proteins to stay healthy. When you hear the word "protein" you might think of such food as meat and peanut butter that contain protein. Your body also makes proteins, and your genes tell your body how to make proteins your muscles need. Children with muscular dystrophy have genes that have the wrong information or leave out important information, so the body can't make these proteins properly. Without these proteins, the muscles break down and weaken over time. As this happens to muscles, children with muscular dystrophy begin to have problems with the way their bodies work.

Types

Among the nine types of muscular dystrophy, seven affect children. The seven types are:

Duchenne Muscular Dystrophy: The protein dystrophin helps to keep muscle cells whole and healthy. Duchenne Muscular Dystrophy happens when this protein is missing. It usually begins in early childhood (between the ages of 2 to 6). Duchenne eventually affects the heart and breathing muscles. Children with this kind of Muscular Dystrophy don't usually live beyond the early 30s.

Becker Muscular Dystrophy: This form of MD also happens when the body does not make enough of the protein dystrophin. It is very similar to Duchenne MD but often less severe. Many children with this type of MD have heart problems. Children with Becker's MD though usually live to middle age older.

Emery-Dreifuss Muscular Dystrophy: This type is caused by a sudden change in the genes that produce proteins in the muscle cells. Each cell has a nucleus surrounded by a membrane where the proteins are suddenly changed. It usually begins by age 10. This type of MD progresses slowly. Heart complications are common.

Limb-Girdle Muscular Dystrophy: This type is caused by a change in any one of a possible 15 genes that affect proteins the body needs for muscles to work. The beginning of this form of MD can occur anytime during childhood through adulthood. Limb-Girdle usually progresses slowly.


Faciosapulohumeral Muscular Dystrophy: It is usually diagnosed by age 20. Faciosapulohumeral MD usually progresses slowly with some periods when the muscles worsen rapidly. It is caused by a missing DNA on chromosome 4. DNA is a necessary component of all living matter and a basic material in the chromosomes.


Myotonic Muscular Dystrophy: The disease appears at birth in one form, but another form begins in teen or adult years. The progress of changes in how the muscles work can last 50 to 60 years. It is caused by a repeated section of DNA on either Chromosome 3 or 19. DNA is a necessary component in all living matter.

Congenital Muscular Dystrophy: It is caused by changes affecting some of the proteins needed by muscles and can affect the eyes and brain. The disease begins at or very near birth. Sometimes this type progresses slowly, but still can cause a shortened life span.

More Information

To get more information, click here. 

*Most of the information provided here is from the Teach More/Love More site, click here to visit their site.

Featured Condtion/Disease: Spina Bifida

We are featuring a childhood/infant disease or condition informational post every other Friday.  Today's topic is Spina Bifida.

Definition

Spina bifida, a condition present at birth, includes three kinds: Occulta, Meningocele (mild disabilities or problems later), and Myelomeningocele. This fact sheet is about the most serious -- Myelomeningocele.

Spina bifida occurs while the baby is still developing and growing inside the mother. The baby's spine doesn't develop correctly. At birth the spinal cord is open at the back or exposed (also called a neural tube defect). Early in pregnancy, cells form a closed tube (neural tube) that eventually becomes the baby's brain and spinal cord. A neural tube defect happens when the tube does not completely close. A neural tube defect can happen anywhere on the spine, but usually happens to the lower part of the spinal cord. A child born with a neural tube defect usually will have difficulty walking, and may need leg braces, crutches, a walker and, in some cases, a wheelchair (Gargiulo, 2001).

Spina bifida differs for every person. Many children with spina bifida have hydrocephalus (a build-up of fluid on the brain). Because children with spina bifida have problems with the spine, the fluid in the brain does not drain properly.

Other potential difficulties occurring with spina bifida include full or partial paralysis (the inability to move part or all of the body). Children with spina bifida and full or partial paralysis also may have problems with weight gain and obesity.   Since children with spina bifida usually have damage to the spine, they can have problems with the nerves controlling the bladder and bowels. (These nerves are in the lower part of the spinal cord.) They may have problems controlling their bladder and bowel (unable to tell when they need to use the bathroom).

Children with spina bifida more likely have learning disabilities, problems with depression and an allergy

to latex (reaction to a common type of rubber). They sometimes have social and sexual issues because they may go through puberty at a younger age than most children.

Evaluation/Screening

If you have a child from the age from birth to three years old, you can have your child screened for spina bifida through the Florida Early Steps program.  Click here to see a list of Early Steps offices in your area.


More Information

To get more information about spina bifida, click here.




*Most of the information provided here is from the Teach More/Love More site, click here to visit their site.

Housing For Seniors

What to Look For in a Nursing Home

Looking for housing options for yourself, an aging parent, relative, or friend?  Do some research first to determine what kind of assistance or living arrangement you need; what your health insurance might cover; and what you can afford. Then check here for financial assistance resources and guides for making the right choice.

The following are some tips on what to look for in a nursing home to help prevent bad care and abuse of your loved one:

• Get a durable power of attorney for medical care so that you can make health care decisions and review medical records.
  
• Request a complete facility profile from the State Health Department, Licensing and Certification Department for the facility you intend to use. Note the number of complaints, the fines assessed and whether the fines have been paid.
  
• Notice how many people in the facility seem to be in stupors or in bed or unable to walk or talk. If many patients fall into this category, be wary of over medication at the facility, especially with the psychotropic drugs Haldol, Thorazine, Mellaril and Prolixin.
  
• Visit at different times during the day, including meal times. Take notice of the types of food and nutritional balance. Dehydration is a problem, so make sure water is available at all times and that it is easily accessible to the patient.
  
• Be sure the patient is actually seen by the doctor and talk with the doctor personally. If the doctor is difficult to contact, bring in another doctor to examine the patient.
  
• Take seriously any complaints the patient has about mistreatment by the staff. Don't accept the facilities statement that the patient is old and doesn't know what's going on.
  
• Check the patient's body for bedsores, particularly the tailbone, feet and hips. Stage 4, the most serious stage of bedsores, causes death in many cases.
  
• Report any signs of bad care to the state licensing office in your state that licenses and regulates nursing homes. Be sure to follow up on the complaint to insure accountability.

More...



Types of Care Facilities

Board and Care: This type of facility does not require to have either nurses or doctors on staff. They provide meals and activities for residents, as well as some help with dressing, eating and hygiene. In most of these facilities, residents must be ambulatory.

Independent-Living Facilities: These facilities include retirement centers, mobile-home parks and single-family homes. Levels of care vary. Some serve meals in common dining halls, while others may have assisted living services.

Intermediate-Care Facilities: These facilities provide medical care to people who need 24-hour supervision and occasional skilled nursing care. Residents must be able to walk or use a wheelchair and have some control over bowel and bladder functions.

Skilled Nursing Facilities: Around-the-clock nursing supervision and care for residents who need help with dressing, eating, bowel and bladder care, and taking prescription medications. Different types of therapy, such as physical, speech or occupational, is also provided. This type of care is very institutional and being run mostly by large corporations for profit.

Sub-Acute Care Facilities: These facilities provide care outside the acute-care wards of hospitals. They are basically for patients on respirators or nasal/tube feeding.

Who Pays: Pay for these types of care vary from private pay, MediCare (the federal health insurance program for the elderly) or by MediCaid (the federal/state partnership providing health care for the poor).


Other Resources:
Filing a Complaint
Foundation Aiding the Elderly
Housing for Seniors