Rare Disease Day 2025 is on Friday, February 28, 2025: information on rare and deadly diseases.?

Friday, February 28, 2025 is Rare Disease Day 2025.

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Rare Disease Day is an awareness hung on the last day of February to increase awareness about diseases that most people will certainly not understand of, along with to improve access to treatment. EURORDIS (The European Company for Rare Diseases) claims that therapy for several uncommon illness is insufficient, and some people's high quality of life is greatly prevented by disparity, merely due to the fact that folks have actually never ever heard of their illness, or do not recognize the condition and the person's demands. Since 2008, EURORDIS has been implemented social networks to aid sustain people with rare conditions and their households, as well as Co-Ordinating events for Rare Disease Day at an international degree.2010 provided balloon launches, marathons, public auctions and tree growing occasions to raise recognition, and every year people impacted by unusual diseases are encouraged to share images and their stories with the world.

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child’s birth, or during the first 3 to 5 years of a child’s life. There is no cure for CP, but treatment, therapy, special equipment, and, in some cases, surgery can help a child who is living with the condition.

Your brother, Charlie probably has ataxic cerebral palsy which account for his disturbed sense of balance and depth perception . Visual impairment or blindness is another associated medical problem.

His mitochondrial disease or cytopathy is DNA related. The common factor among these diseases is that the mitochondria are unable to completely burn food and oxygen in order to generate energy

The types of mitochondrial diseases are categorized according to the organ systems affected and symptoms present. Mitochondrial diseases might affect the cells of the brain, nerves (including the nerves to the stomach and intestines), muscles, kidneys, heart, liver, eyes, ears, or pancreas. In some patients, only one organ is affected, while in other patients all the organs are involved. Depending on how severe the mitochondrial disorder is, the illness can range in severity from mild to fatal.

Depending on which cells of the body are affected, symptoms might include:

Poor growth

Loss of muscle coordination, muscle weakness

Visual and/or hearing problems

Developmental delays, learning disabilities

Mental retardation

Heart, liver, or kidney disease

Gastrointestinal disorders, severe constipation

Respiratory disorders

Diabetes

Increased risk of infection

Neurological problems, seizures

Thyroid dysfunction

Dementia (mental disorder characterized by confusion, disorientation, and memory loss)

How common are mitochondrial diseases?

About one in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years. One thousand to 4,000 children per year in the United Sates are born with a type of mitochondrial disease.

In adults, many diseases of aging have been found to have defects of mitochondrial function. These include, but are not limited to, type 2 diabetes, Parkinson's disease, atherosclerotic heart disease, stroke, Alzheimer's disease, and cancer. In addition, many medicines can injure the mitochondria.

What causes mitochondrial disease?

For many patients, mitochondrial disease is an inherited condition that runs in families (genetic). An uncertain percentage of patients acquire symptoms due to other factors, including mitochondrial toxins.

Causes of Cerebral Palsy

The exact causes of most cases of CP are unknown, but many are the result of problems during pregnancy in which the brain is either damaged or doesn't develop normally. This can be due to infections, maternal health problems, or something else that interferes with oxygen reaching the fetal brain. Problems during labor and delivery can cause CP in some cases.

The reasons why your brother goes tothe hospitals often are for regular therapies. Therapies can help kids with CP achieve maximum potential in growth and development. As soon as CP is diagnosed, a child can begin therapy for movement, learning, speech, hearing, and social and emotional development. In addition, medication, surgery, and braces can help improve muscle function.

Surgery can help repair dislocated hips and scoliosis (curvature of the spine), which are common problems associated with CP. Severe muscle spasticity can sometimes be helped with medication taken by mouth or administered via a pump (the baclofen pump) implanted under the skin

Crohn's disease????????????????????????

Yes it's quite rare that someone would be required to get one. I also have the disease and will most likely never have one. Most people respond to some sort of drug treatment. I did worry about it when I was first diagnosed. Try and think of it this way: Most people that have CD are doing very well and are out living their lives. They don't come to websites like this or blog about their disease because they are successfully living their day to day life. The cases you typically hear about are the really bad ones. The people doing well never talk about it because they are not required to think about it constantly because it does not affect their day to day lives.

Don't let people try and scare you. Crohn's is not a death sentence because you cannot die from it. Society itself likes to dwell on the negative. Take good care of yourself and you will have great success!

If your spouse had a rare disease where, if he didn't have sex 3x daily, he would die; would you let him cheat?

I would have sex with him 3 times a day if he wanted to, but I would not be happy about him having sex with someone else. We did used to have sex 3 times a day quite frequently when we were younger, and I could probably manage it now if I had to.