I am raising money for the Encephalitis Society because this year Struan’s mum, Lyndsay was diagnosed with LGI1 antibody encephalitis. Through fundraising I would like to raise awareness of the condition as well as raise funds towards further research.

 

At the end of last year, those closest to Lyndsay started noticing a change in  her behaviour, particularly with forgetfulness and at the same time she started to experience palpitations which caused her to catch her breath which was very distressing. She attended the doctors to investigate the underlying cause of these symptoms but nothing was showing up in any tests. Later on, Lyndsay experienced a few seizures and was referred to neurology. Throughout this time, Lyndsay started to become more withdrawn which was very unlike her and had to take time off work while investigations continued.

 

After months of worrying about the cause of these unusual symptoms, Lyndsay was diagnosed with LGI1 antibody encephalitis. This is where the body produces antibodies which attack a part of the brain, explaining the memory issues, seizures and character change. Luckily, this could be treated with high dose steroids which help to dampen the body’s immune response. Quite soon after starting treatment, Lyndsay’s short term memory improved, she started to engage in every day activities again and she got back her enthusiasm for life. 

 

Although her symptoms have significantly improved and we can all see that the old Lyndsay has returned, there are still some lingering symptoms. Unfortunately because Lyndsay had seizures she is temporarily unable to drive which causes her challenges every day but we’re all hopeful she’ll be able to drive again soon. She does get tired if she does too much so we all have to be mindful of this & gently remind her not to be too ambitious or impatient with things.  However, we are all delighted and thoroughly relieved her condition has been diagnosed and she’s very much on the road to recovery. 

 

As this disease was only relatively recently discovered, there is still much to learn about what happens to patients in the long-term. Relapse occurs in 10-30% of people with the condition but it is still not known what leads to this reoccurrence and it is still unknown what causes the body to produce these antibodies in the first place .

 

For more in depth information about the condition please see the link below which has a helpful video:

 

https://www.encephalitis.info/lgi1caspr2-antibody-encephalitis