Home About Kennedy's Disease What is Kennedy's Disease

Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

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Will my child be born with this DNA defect?

It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

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Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

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What is Kennedy's Disease?

Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.

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What is Kennedy's Disease PDF Print E-mail

Kennedy's Disease goes by many names including:

  • X-linked Spinal and Bulbar Muscular Atrophy

Kennedy's Disease is a rare and currently incurable and non-treatable X-linked recessive genetic progressive neuro-muscular disease. Both the spinal and bulbar neurons are affected causing muscle weakness and wasting (atrophy) throughout the body which is most noticeable in the extremities (legs/arms), it is especially noticeable in the face and throat, and causes speech and swallowing difficulties, major muscle cramps as well as other symptoms (please see "Symptoms" section of this Web site for more detail).


Kennedy's Disease is an adult-onset disease with symptoms usually appearing between the ages of 30 and 50. However, earlier and later onsets have been recorded.


Generally males with this inherited gene develop symptoms, while females with this gene are usually just carriers. In rare cases, females have been known to exhibit symptoms as well. Life expectancy is noted to be at or almost normal.


It is estimated that 1 in 40,000 individuals worldwide have Kennedy's Disease. However, many go undiagnosed or misdiagnosed for years. The most frequesnt misdiagnosis is the fatal Lou Gehrig's Disease (ALS).


What causes the symptoms that are associated with Kennedy's Disease:

Motor neuronsMotor neurons are long nerve cells that extend from your spinal cord to your muscles. These nerve cells fire to make your muscles contract. In KD (Kennedy's Disease) the nerve cells become dysfunctional and eventually die, leaving the muscles unable to contract.

 

 

 

Androgen_Receptor_with_KD The androgen receptor is a protein that resides inside the nerve cell. Many cells have the androgen receptor protein, but motor neurons have more than most. The binding of testosterone to an androgen receptor somehow causes the onset of the disease. Men are generally affected by KD because they have much higher levels of testosterone than women.

Wikipedia - Definition of Kennedy's Disease (also genetic chart)

 

Genetics Home Reference Library (A good resource)