One of my friends has just received the devastating news that two of her children have the gene linked to Battens Disease, a life-limiting neurodegenerative disease.
Battens disease is rare, it develops when a child inherits abnormal genes from both parents.
The disease was recognised by Dr Frederick Batten in 1903 but it wasn’t until 1995 that the genes causing Battens disease were identified.
There are approximately 100- 150 people living with Battens disease today in the UK.
[x_custom_headline type=”left” level=”h3″ looks_like=”h3″]Symptons associated with Battens Disease[/x_custom_headline]
These are the main symptons of Battens disease:
- Visual impairment resulting in blindness.
- Complex epilepsy with severe seizures that are difficult to control.
- Myoclonic (rapid involuntary muscle spasm) jerks of limbs.
- Difficulties sleeping.
- The decline of speech, language and swallowing skills.
- A deterioration of fine and gross motor skills that result in the loss of mobility.
[x_custom_headline type=”left” level=”h3″ looks_like=”h3″] Rare Disease Day – February 28 2017[/x_custom_headline]
Rare Disease Day on 28th February aims to raise awareness of rare diseases and raise funds for the medical professionals to research cures for many rare diseases.
Show your support on Social Media using #RDD2017 on your posts and Tweets.
[x_custom_headline type=”left” level=”h3″ looks_like=”h3″]Fund raising for Battens Disease[/x_custom_headline]
If you go onto the BDFA (Battens Disease Family Association) website you will find lots of fund raising challenges and events to take part in or run an event in your community.
[x_custom_headline type=”left” level=”h4″ looks_like=”h4″]Batten Fighters Forever[/x_custom_headline]
My friend has a Facebook page called Batten Fighters Forever so we encourage you to like this page and support the family’s fight with this life changing event.
Her family will be working hard to during this difficult time to raise awareness and funds to help find a cure.
[x_custom_headline type=”left” level=”h3″ looks_like=”h3″]Juvenile Batten Disease[/x_custom_headline]
[x_custom_headline type=”left” level=”h3″ looks_like=”h3″]Find out more[/x_custom_headline]
Find out more about Battens Disease and the BDFA at their website.
You can also help by making an online donation.
[x_button shape=”pill” size=”mini” float=”left” block=”true” circle=”true” href=”https://www.justgiving.com/fundraising/BF4ever” title=”Just Giving BFF page” target=”blank” info=”popover” info_place=”top” info_trigger=”hover” info_content=”Donate to Just Giving BFF”]Donate today to Batten Fighters Forever[/x_button]
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