#IceBucketChallenge Is No Laughing Matter

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 The first video of the ALS #IceBucketChallenge I saw on FB was of a young girl in a bikini, standing in her dark bathroom, pouring cold water over her head and then tagging her four friends to do the same or else donate $100 to the charity. In her comment box there were her friends who were against this idea of accepting her challenge.

I found it strange that people would do such silly things to raise funds in this way for the cause as serious as ALS.

Just then I read another friend’s status that read “Hit yourself on the head with a cast-iron bucket it to raise awareness about stupidity. Welcome to the #KickBucket challenge.”

It seemed stupidity to me too. What was this challenge and what was a big deal. I posted on my wall “What is the big challenge? Indian do have ice cold bucket bath everyday”

As the day progressed, my FB time line was getting flooded with many such videos of known people accepting #IceBucketChallenge. It was going viral. In the trending column, it showed that donations to the A.L.S. Association, a Washington-based nonprofit that funds global research to find treatments and a cure for the disease, had surged since the challenge started trending in late July. The group said Thursday morning that it had received $41.8 million in donations from July 29 until Aug. 21.

$41.8millions raised for challenge of ice cold bath?

“NO, people. do NOT post pictures of yourselves in bathrooms with a bucket, wet from a bath. NOBODY wants to see you that way, and it is NOT what the ice water bucket challenge is all about.” Screamed the status of yet another friend.

Was it a joke that people were enjoying? And why were educated people on my FB list doing it too?  Another friend wrote:

"Stop calling ice bucket challenge 'stupid' or 'useless' because it is not. Yes the water is getting somewhat wasted but it is more of an investment than wastage... Get your facts rather than criticizing every damn thing!!!" 

In conversation with my niece, it finally began to make sense. She told me about her 30years old friend (she knew in Bangalore) who was suffering from this illness. She said that he had two small kids and he had very little time to live.

When the disease strike some one close, a person we may know, we begin to feel its weight. We understand the seriousness of this disease.

Amyotrophic lateral sclerosis (ALS)—also referred to as motor neurone disease (MND), Charcot disease, and, in the United States, Lou Gehrig's disease—is a neurodegenerative disease with various causes. It is characterized by muscle spasticity, rapidly progressive weakness due to muscle atrophy, difficulty in speaking (dysarthria), swallowing (dysphagia), and breathing (dyspnea). ALS is the most common of the five motor neuron diseases.

One moment, a person is leading a very normal life, enjoying a game of basketball, and next moment he feels heaviness in his feet. He stumbles and falls, then experiences awkwardness when walking or running. Over the time, he starts experiencing difficulty in moving, swallowing, speaking or forming words. His muscles begin to tighten and there is exaggerated reflexes including an overactive gag reflex. Difficulty in chewing and swallowing makes eating very difficult and increases the risk of choking or of aspirating food into lungs. In later stages of the disease, aspiration pneumonia can develop, and maintain a healthy weight can become significant problem that may require the insertion of a feeding tube,

Although his mind remains sharp, ALS, that attacks his nerve cells, can ultimately lead to paralysis. Life expectancy is typically two to five years from the time of diagnosis.

The exact cause is not understood and there is no cure or treatment that can stop or reverse the disease. There is need to find a proper drug to cure the person from this disease.

I finally began to understand the seriousness of this disease and the importance of doing research. By ALS #IceBucketChallenge, a lot of awareness has been spread, by tagging people on social media, a united chain has been created and people are donating happily for this cause.

And all things said and done, there is humor behind this serious cause.

Source:

http://www.alsa.org/about-als/

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

Microcephaly ~ Devang Chavan

When I went to his class, he was cleaning coriander leaves, slowly and carefully, observing each leaf as he cut off the edges and placed the leaves aside with the bunch of other leaves.



Devang Chavan is ten year old shy kid, who is very active and independent in all his personal skills. He can read and write simple text, good in functional mathematics and can perform simple task independently. He helps his mom at home by running few errands like buying grocery from a store, or helping at home.

He suffers from Microcephaly, which is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing.

Microcephaly can be present at birth or it may develop in the first few years of life. It is most often caused by genetic abnormalities that interfere with the growth of the cerebral cortex during the early months of fetal development. It is associated with Down’s syndrome, chromosomal syndromes, and neurometabolic syndromes.

Babies may also be born with microcephaly if, during pregnancy, their mother abused drugs or alcohol, became infected with German measles, or chicken pox virus, was exposed to certain toxic chemicals, or had untreated phenylketonuria (PKU).

Babies born with microcephaly will have a smaller than normal head that will fail to grow as they progress through infancy. Depending on the severity of the accompanying syndrome, children with microcephaly may have mental retardation, delayed motor functions and speech, facial distortions, dwarfism or short stature, hyperactivity, seizures, difficulties with coordination and balance, and other brain or neurological abnormalities. Some children with microcephaly will have normal intelligence and a head that will grow bigger, but they will track below the normal growth curves for head circumference.

Devang was five years old when he was admitted to Swami Brahamanand School, centre for Mentally challenged. He was very restless and hyperactive. His speech was limited to few words. He had the history of prolong illness and had to be hospitalized several times for diarrhea, respiratory track infection and convulsions. His development milestones were delayed from birth.



Over the period of six years, he has shown marked improvement in behavior and is quite obedient and well mannered. He is shy and does not interact freely in the company of strangers. He takes active part in sports and extra curriculum activities and is being trained in pre-vocational skills.

Children, like Devang, will only have mild disability, especially if they are otherwise growing and developing normally, will have normal intelligence and continue to develop and meet regular age-appropriate milestones.

There is no treatment for microcephaly that can return a child’s head to a normal size or shape. Treatment focuses on ways to decrease the impact of the associated deformities and neurological disabilities. Children with microcephaly and developmental delays are usually evaluated by a pediatric neurologist and followed by a medical management team.

Early childhood intervention programs that involve physical, speech, and occupational therapists help to maximize abilities and minimize dysfunction. Medications are often used to control seizures, hyperactivity, and neuromuscular symptoms. Genetic counseling may help families understand the risk for microcephaly in subsequent pregnancies.

However, ‘The National Institute of Neurological Disorders and Stroke’ (NINDS) conducts research relating to microcephaly in its laboratories at the National Institutes of Health (NIH) and supports additional research through grants to major medical institutions across the country. A small group of researchers studying a rare neurometabolic syndrome (3-PGDH), which causes microcephaly, have successfully used amino acid replacement therapy to reduce and prevent seizures.


Source: http://www.ninds.nih.gov/

Case history of Dandy-Walker Syndrome Child~ Jaisal Bakshi

Jaisal Bakshi is ten year old Dandy-Walker Syndrome child. He was admitted in Swami Brahmanand Pratishthan, Centre for Mentally Challenged two years ago. During that time, his condition was quite severe. But, he has very loving family, who work very hard on his progress and they co-operate with the teachers at school in helping him cope with his problems. He has shown marked improvement during these two years, he has better coordination of muscle movements, is able to recognize and respond to insructions and loves Bollywood music.

Dandy-Walker syndrome (DWS) is a congenital (present at birth) brain malformation typically involving the fourth ventricle and the cerebellum. The disorder was first described in 1914 by W. Dandy and K. Blackfan and was designated as Dandy-Walker syndrome in 1954 by C. Benda, who also reported familial occurrence. DWS occurs in one out of every 25,000 live births.

The following characteristics have been seen in children with Dandy-Walker syndrome:

• Enlargement of the fourth ventricle
• Absence (partial or complete) of the cerebellar vermis (area between the two cerebral hemispheres)
• Cyst formation in the posterior fossa (internal base of the skull)
• Slow motor development in early infancy
• Progressive macrocrania (abnormally enlarged skull)
• Hydrocephalus
• Seizures
• Intracranial pressure in older children, causing irritability, vomiting, and convulsions
• Cerebellar dysfunction causing ataxia and nystagmus
• Bulging occiput (back of head)
• Cranial nerve dysfunction
• Abnormal breathing patterns
• Agenesis of the corpus callosum
• Malformations of the face, limbs, digits, and heart
• Cleft lip and palate
• Urinary structural abnormalities

The majority of individuals with DWS are diagnosed their first year of life as a result of the commonly associated hydrocephalus. However, the definitive diagnosis can be made by ultrasound, CT-scan, or MRI.

Treatment consists of treating the associated symptoms (i.e., anticonvulsants for those with seizures and the insertion of a shunt for those with hydrocephalus). Balance problems and spasticity may occur and warrant physical therapy. Occupational therapy may be helpful for those with poor fine motor control.

The syndrome can appear dramatically, or be totally asymptomatic. Therefore, the prognosis for normal intellectual development varies depending on the severity of the syndrome and associated malformations. Difficulties in learning occur in 35-70% of children with DWS. Statistics in the literature citing a high rate of mental retardation most likely reflect injury due to inadequate management of the associated hydrocephalus, something which is less likely to occur today than in the past. Many children with DWS can be mainstreamed at school. Pediatricians, pediatric neurologists, pediatric neurosurgeons, geneticists, physical therapists, and educational specialists may be required to systematically follow these children and work towards ensuring that the child is given the best opportunities to reach his or her full potential.

Source: http://www.specialchild.com/