Get a Better Understanding of Secondary Conditions Associated with Spina Bifida

As we are one month into the New Year, we at SBA hope that you are still holding fast to your resolutions to get healthier. Anyone who lives with Spina Bifida knows that doctors work to treat several conditions associated with Spina Bifida, but there are also secondary conditions that you, as the individual with Spina Bifida, should understand and take action to prevent in order to maintain better health. This year make it your goal to understand conditions such as diabetes, pain, and osteoporosis, so that when you visit your doctor, you can be informed about how these could affect you.

Pain
We all suffer from pain from time to time. Individuals with Spina Bifida are prone to pain more so than the average person. They often get headaches caused by many things like tension, migraines, or hydrocephalus. If you have a shunt, headaches can be a warning that your shunt is not working properly, and you should consult your physician immediately. SBA's When to Call the Doctor Card.

Pain in other areas can be caused by problems with internal organs (visceral pain). Common locations of visceral pain include upper and lower abdomen, chest, pelvis, jaw, neck, upper arm, and upper or lower back. Pain associated with spine and spinal cord problems can affect any areas of the body, but often involve the back, neck, arms or legs.

As people with Spina Bifida age, they often have pain associated with degenerative conditions that affect the spine, joints, or muscles (musculo-skeletal pain). In Spina Bifida, commonly seen conditions are: arthritis, osteoporosis, carpal tunnel syndrome, and tethered cord syndrome. Back pain is common in adults and can be very debilitating.

There are many causes of pain, and each type determines how long it will last. Pain is generally classified in two categories: acute or chronic. People with Spina Bifida can have either type of pain or both at the same time.

What is chronic pain?
If the pain has lasted for weeks or months and the condition that causes it cannot be cured, then you may have chronic pain. Chronic pain affects all aspects of a person's life and the longer it persists, the more difficult it is to get under control. Therefore, it should not be ignored. Chronic pain is very serious and should be treated as a disease in itself. As most individuals would seek medical attention for acute pain, people with Spina Bifida also should seek attention for chronic pain.

Can I prevent chronic pain?
All people experiencing pain, acute or chronic, should see a physician. Acute pain occurs suddenly. It happens in relation to a specific tissue injury and is often treatable. Acute pain can be severe, but it doesn't last long. People who have this type of pain usually know why they hurt. That is very different from chronic pain, which is often ignored or not managed until it becomes a big problem.

SBA Pain Information Sheet

Osteoporosis
Osteoporosis is a disease that causes bones to become weak and leads to breaks, called fractures. It is a serious condition. As each of us ages, our bones become thinner on the inside although they may still seem hard on the outside. Too much thinning over time can cause the bones to become fragile and prone to damage. This is called osteopenia. If osteopenia is untreated, it can lead to osteoporosis.

What causes osteoporosis?
The normal bone cycle is that old bone breaks down and is replaced with new bone. Osteoporosis creates an imbalance in this rebuilding cycle—old bone breaks down but new bone does not form. For women, this process speeds up after menopause. For both men and women, as we age beyond 40 or 50 years old, our bones gradually lose their density. One in two women and one in four men over the age of 50 in the U.S. will break a bone due to Osteoporosis.

Who is at risk for osteoporosis?
Currently, there are 10 million Americans with osteoporosis and 34 million more are at risk of developing the disease. This is relevant for the Spina Bifida population because early onset osteoporosis (developing the disease in your 20s or 30s) occurs in almost 50% of adults with Spina Bifida. Relevant risk factors for people who have Spina Bifida include: being female, immobility or reduced physical activity, renal failure, prior ileal diversion surgery, use of epilepsy medications or corticosteroids, family history of hip fractures or diagnosis of osteoporosis.

SBA Osteoporosis Information Sheet

Type 2 Diabetes
Also called "adult onset" or "non-insulin dependent diabetes," Type 2 diabetes is a chronic condition that affects how the body uses insulin to metabolize glucose (sugar), which is the body's main source of fuel. It is the most common type of diabetes but is also the most preventable.

People who have type 2 diabetes either do not produce enough insulin, or the body resists the effects of the insulin, as a consequence of the metabolic changes that result from being overweight and obese. This problem often comes on slowly and may initially appear as "pre-diabetes," also called metabolic syndrome.

What are the risks for type 2 diabetes?
Although experts still aren't sure what causes type 2 diabetes, there are clearly identified risk factors that relate to lifestyle, and there are action steps that can delay or prevent the development of the disease.

Obesity-People who are overweight, especially those whose fat settles in the abdomen rather than the legs and hips, are at high risk for insulin resistance and diabetes. At least 50% of children and adults with Spina Bifida are obese, putting them at very high risk for diabetes in their life.

Inactivity/immobility-Increased exercise helps to maintain a healthy weight. Physical activity burns glucose for energy, increasing the cells' ability to use the insulin. There are many options for exercise for people with Spina Bifida.

Family history- Hispanics, American Indians, Asian Americans, and African Americans are the highest risk group for type 2 diabetes. However, any family history of diabetes should be a concern.

Personal history-A diagnosis of pre-diabetes or gestational diabetes (diabetes during pregnancy)

Age- Risk increases with age. People over the age of 45 are considered high risk. However, insulin resistance and type 2 diabetes are increasing among children and adolescents. This increase is attributed to obesity, poor nutrition, and lack of exercise.

SBA Type 2 Diabetes Information Sheet

Additional information
Top Ten Tips: Make the Most of Your Medical Visits

The Spina Bifida Experience: The Importance of Physical Activity