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KD patient sitting with three medical professionals
Support Network

Living with KD

Overview

You are not alone in your quest for a treatment and cure!

Keep from falling note
Keep from falling

Kennedy’s Disease (KD) is a rare disorder and initial KD symptoms and age of onset vary. Initial symptoms often include fatigue, muscle cramping, spasms, tremors and muscle weakness. Bulbar (neck and throat) symptoms can occur causing difficulty with swallowing and speech. Symptom onset is most common in in men in their 30s but can vary from 4 to 78 [Natural History]. Disease progression is generally slow. CAG repeat length can inversely correlate with the age of symptom onset.
The Kennedy’s Disease Association (KDA) mission is to provide information, resources and support for those living with Kennedy’s Disease, including caregivers, spouses, significant others and families.

Connect with Others!

Four young people arm in arm in field
Four young people arm in arm in field
  • Connect with others via our monthly group support calls via Zoom. For information regarding these groups and see support groups in different countries, click here
  • Our KDA Forum forum provides an opportunity to ask questions, share information, and build relationships.  To Access the Forum click here.
  • The KDA is on Facebook. Check us out and follow us! Find our page by clicking here.
  • The KDA is on LinkedIn. Connect with us by clicking here.
  • Attend a KDA Conference - The KDA held their first annual annual conference in 2001 and has held conferences every year to bring men, woman and researchers together to share and learn about living with Kennedy's Disease. To see upcoming and past conference information, click here.

Personal Stories of Individuals Living with Kennedy's Disease

Each of the following individuals live with Spinal Bulbar muscular Atrophy (Kennedy's Disease). They have been kind enough to share their personal stories for others so that they can understand the disease on a more personal level. We thank these individuals for their information.You can access their stories by clicking here.

Medical Information

With Kennedy's Disease being a very rare disease. Medical concerns can arise. The KDA has put together a section of resources that addresses some of these concerns that may arise for those who suffer from Kennedy's Disease. This includes surgery concerns to Covid vaccination guidelines to disease management guidelines. To access this Medical Information page, click here.

Short KD Reference Guides

The KDA has created short Kennedy's Disease reference guides. These 1-2 page documents provide information for patients as well as medical personnel who may not be familiar with KD. We encourage you to print copies to share with doctors, clinicians, and therapists. To access these guides, click here.

Library resourse section two floors
Library

Additional Resources

The Kennedy’s Disease Association (KDA) has identified several resources to help individuals and their families understand and live with this rare neurological disorder. These include:

  • From the Living with Kennedy’s Disease Blog which has articles related to living with Kennedy’s Disease, research, personal stories and plenty of resources related to Kennedy's Disease.
  • YouTube videos related to Kennedy's Disease.
  • Exercises that might help those living with the disease.
  • Links to 3rd party sites which discuss Kennedy's Disease.

To access the additional research page, click here.

 

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