We know that this date’s official name is World Birth Defects Day. To avoid the stigmatization the word “defects” carries, at TeletonUSA Foundation, we have decided to use the term “conditions” to commemorate this day.

What are birth conditions?

Birth conditions are health factors present at birth that alter the shape or function of one or more body parts. These conditions can be diagnosed before, during, or after birth. On average, birth conditions affect 1 in every 33 babies born in the United States, which translates to 120,000 babies each year.

Some birth conditions are easy to see, but others are diagnosed with x-rays and hearing tests. Its causes may be genetic, disorders that occur during pregnancy, or things such as smoking or drinking alcohol during pregnancy, obesity, or being an older mother.

The most common birth conditions are:

• Cleft lip and palate
• Spina bifida, also called myelomeningocele
• Down Syndrome

Why do we have World Birth Conditions Day?

This day is important for three reasons:

First, to expand the prevention, care, and research of birth conditions. 

Second, to raise awareness about the importance of giving all women access to health services during pregnancy.

Third, it makes society aware of the need to guarantee access to rehabilitation services for children born with a congenital condition that causes disability.

TeletonUSA Foundation and congenital conditions

At CRIT, we have early stimulation therapy, which cares for children with risk factors at birth. These factors include being underweight, short-height, or any minor challenge.

Early intervention represents the possibility of adequate development according to each patient’s expectations. This clinic aims to give all children with congenital disabilities the tools they need to enjoy the best possible quality of life.

Sources:

• https://www.cdc.gov/ncbddd/birthdefects/facts.html
• https://www.marchofdimes.org/find-support/blog/why-do-we-have-world-birth-defects-day

Since 2008, International Wheelchair Day has been commemorated every March 1st. One of its goals is to recognize the achievements in the progress of people with mobility disabilities when they have access to a wheelchair. Therefore, this day is an opportunity to celebrate the positive impact of wheelchairs on the lives of the people who use them. Plus, it’s a great reminder to celebrate caregivers of people with significant mobility challenges.

The wheelchairs 

Wheelchairs are assistive devices for people with motor impairments. To choose the correct wheelchair, the guidance of a professional is necessary so a person with a disability can achieve a higher level of independence.

There are different types of wheelchairs. Standard wheelchairs are the most common; these do not have much functionality and are difficult to use. There are also specific wheelchairs for people with neurological challenges; wheelchairs with posture support that help maintain a sitting position; electric wheelchairs; and dynamic wheelchairs for people with mobility challenges from the waist down but with mobility of the upper limbs. In addition, there are wheelchairs for sports use, which vary from discipline to discipline.

The availability of many wheelchairs is why each person must receive specific guidance when selecting and using their wheelchair.

Three things you can do to support

Wheelchair users face spatial barriers when getting around. But beyond that, there are social barriers that can be changed. Today, we share three of them:

1. Do not obstruct wheelchair access on sidewalks or parking lots.
2. Do not use exclusive access for wheelchairs when you do not need them.
3. Be aware that the achievement of rehabilitation is not for a person with a disability to walk but for them to reach their maximum degree of independence (this includes using a wheelchair).

TeletonUSA Foundation and wheelchairs

At TeletonUSA Foundation, we know how important it is for our patients to find the most suitable wheelchair. When needed, our medical team assists families in searching the adequate device based on the patient’s condition, necessities, and physical abilities.

At CRIT, physical and occupational therapists assess the patient’s wheelchair for proper use, fit, and any need for repairs. If there is a need for any modifications or size adjustments, therapists refer the patient to the Assistive Technology (AT) specialist. Here, the specialist will evaluate the patient and the need for change or a new chair. The evaluation includes the measurement and the patient’s overall motor control and mobility needs.

Once the measurement and wheelchair type are complete, the application to insurance or funding source begins. When the wheelchair arrives, the AT specialist ensures the proper fit and educates the caregiver on the appropriate use, storage, and maintenance of the wheelchair. The rest of the therapy team continues to follow up with the patient and will relay any information to the AT specialist regarding future modifications to the device.

Our daily goal is for our patients to achieve the most significant independence possible. That is why we provide orientation, rehabilitation, training, and maintenance to wheelchairs at CRIT so that the lives of our patients go smoothly!

In the United States, a rare disease is considered to be one that affects fewer than 200,000 people. There are about 7,000 rare diseases, and an estimated 25 million to 30 million Americans are living with a rare disease.

About 80% of rare diseases are genetic, of which 65% are severe and cause disability. Some rare diseases include cystic fibrosis, muscular dystrophy, spina bifida, and hemophilia.

Why is it important to raise awareness about rare diseases?

Rare diseases are difficult to diagnose for three reasons. The first is due to a lack of knowledge of the general public; the second is due to a lack of scientific research; and the third is because they have such diverse symptoms that they can be confused with other diseases.

It can take over ten years to get an accurate diagnosis (after the first symptom) for one in five people affected by a rare disease. The consequences of this extended timeframe are:

• Lack of access to early treatment.
• Damage to the patient’s health.

Knowing there are rare or low-prevalence diseases is essential, as it can save lives. Talk to your physician to learn more about rare diseases.

Source

• https://www.cancer.gov/publications/dictionaries/cancer-terms/def/rare-disease

The retina is an inner layer of nerves inside our eye. It perceives light and images and sends them to the brain. Retinoblastoma is a type of cancer that occurs when the retina’s nerve cells have genetic mutations. This disease primarily affects children under six, being detected more frequently between the first and second year of life.

Retinal cancer symptoms

In most cases, cancer is curable if caught early. Therefore, it is essential to know the symptoms of childhood cancer. The most common sign of retinoblastoma is a white tint in the pupil that increases when light is shone into the eye. The light may be from a flash photograph.

Other symptoms and signs of retinoblastoma include:

• Eyes that seem to look in opposite directions.
• Eye inflammation.
• Red eyes.
• Vision challenges.

Vision problems from retinal cancer can cause your child to fall often, bump into things, or have trouble moving around the house. Early detection of retinoblastoma is essential to prevent significant problems, such as blindness and the spreading of cancer outside the eye.

If you have some concerns or your child presents one or more symptoms, seek medical advice.

The heart is one of the most active muscles in the human body and is considered one of, if not the most vital organ. The heart’s job is to pump blood throughout the body, sending oxygen and nutrients to other organs. Additionally, the heart gets rid of carbon dioxide and waste products not needed by the body. However, sometimes the heart does not work correctly, and this can be due to congenital heart defects.

Congenital heart defects are diagnosed when abnormal development of the heart or corresponding blood vessels is noted. A congenital heart defect is typically diagnosed at birth or in the first few months of life and occurs in more than one million newborns yearly.

Some of the most common signs and symptoms include:

• Pale gray or blue lips, tongue, or fingernails (cyanosis)
• Rapid breathing
• Swelling in the legs, belly or areas around the eyes.
• Shortness of breath during feedings
• Significantly irritable/fussy
• Lack of energy
• Poor feeding

A congenital heart defect is a broad term; treatment is determined by the specific type of heart defect and its severity. With individual therapy, children can still live long and productive lives.

Source

• https://www.charlottesvillepeds.com/congenital-heart-defect-chd-awareness-week/