As many of you know, I have suffered on and off with a debilitating autoimmune disease since late 2006. This year, I received a diagnosis - Autoimmune Encephalopathy. Some other recognized names include: Steroid Responsive Encephalopathy associated with Autoimmune Thyroiditis and Hashimoto's Encephalopathy. I won't go into detail today about the symptoms or the suffering or the treatment, but I did want to post my support to The Encephalitis Society, based out of the UK - because today, February 22, 2016 has been deemed World Encephalitis Day. They asked us to help get our stories out there and wear red today to raise awareness for this disease that patients, loved ones and even physicians still know little about.
Keep reading below for a press release that was sent out about my story.
Some other links with info include:
After being misdiagnosed for almost 10 years, to have support and treatments to try and hope - mean the world to me. I am so thankful to my loved ones, my doctors, God, and my resilience - that I didn't give up and that I won't.
A Southern California woman is helping in a global awareness campaign about a brain condition that left her with a host of “terrifying” symptoms.
Gretchen Cannon, 35, lost her job and many friends when she was affected by encephalitis, a swelling of the brain.
It would take almost 10 years for her to be correctly diagnosed with the condition as doctor after doctor was baffled by the case.
Now she wants to raise awareness about the condition ahead of World Encephalitis Day on February 22.
Around 500,000 people are affected by encephalitis globally each year, regardless of their age, gender, ethnicity or culture.
For Gretchen, the nightmare began in 2006 when the then fitness competitor became sick after having breast implants – either because of the surgery or the implant materials.
“I had two surgeries to remove them, but still suffered from terrifying symptoms ranging from extreme confusion, memory loss, depersonalization, fatigue, weakness, ataxia, distorted vision, hearing and speech difficulties, anxiety, depression, psychosis, dementia and more.
“I had a seizure, was in a coma, endured countless medical tests and lost my job, many friends and my quality of life.
“I couldn’t function as my old self, needed 24-hour care, and sought help from dozens of doctors that tried to help me but were perplexed by my condition.”
Without the proper treatment, up to a third will lose their life, while survivors can be left with a legacy of challenges brought upon by the subsequent acquired brain injury.
Over the years, doctors found a treatment that helped suppress Gretchen’s symptoms and she eventually was able to work and live a normal life again on medication and with minimal limitations.
However, in 2013, she suffered a debilitating two-year relapse that could not be controlled with her prior treatments.
Gretchen was finally diagnosed, 10 years after her first onset of symptoms, with Hashimoto’s Autoimmune Encephalitis, thanks to her USC Rheumatologist and by travelling to The Mayo Clinic in Rochester, MN, in 2015.
“My symptoms have significantly improved. I now able to drive, read, watch television, and enjoy life a bit more.
“I live at home again but do not know when I will be able to return to work because I still suffer from lingering symptoms.
“But, above all, I am grateful for the diagnosis and relief I have received and want to bring awareness to this terrible condition.”
Gretchen, who was a marketing manager and fashion blogger, is now determined to raise awareness about encephalitis and is adding her support to World Encephalitis Day.
Led by The Encephalitis Society, this year’s event is asking people to “wear something red” on February 22 as part of the #RED4WED campaign to raise awareness and funds.
The public can also vote for the winner in a Short Film, Digital Art and Photography Competition that has attracted entries from across the world by visiting www.worldencephalitisday.org
Dr Ava Easton, Chief Executive of The Encephalitis Society, said: “We launched World Encephalitis Day so people affected by this devastating condition can come together to raise awareness about encephalitis.
“We still have a long way to go to make the public and some health professionals aware of a condition which affects more people than ALS and bacterial Meningitis and yet remains less well known.
“But by having survivors and their families come forward to show the human side of this ‘hidden disability’ can only be a good thing for informing the public about this condition.
“The sad fact is that not many people have heard of encephalitis unless it has happened to them, a family member or friend. We want to change that.”
NOTES FOR EDITORS
THE ENCEPHALITIS SOCIETY
The Encephalitis Society was founded in 1994, is a registered charity and the only resource of its kind in the world providing direct support and information to people affected by Encephalitis, and to their family and friends. In 2015/16 we provided support and information to around 250,000 people and 169,400 health professionals. Our website received 190,000 visitors and nearly 700,000 page views from all over the world
The Encephalitis Society receives no Government funding and relies on income raised from individuals, businesses and grant-making organisations.
Encephalitis is inflammation of the brain and is caused either by an infection invading the brain (infectious); or through the immune system attacking the brain in error (post-infectious / autoimmune encephalitis).
The condition is indiscriminate, striking adults and children alike, showing no respect for age, gender, ethnic origin or culture. Mortality rates are high and in those who survive many are left with an acquired brain injury, the degree and severity of which will vary. Their difficulties may include cognitive, physical, emotional, behavioural, or psychosocial consequences.
The types of symptoms seen in Encephalitis reflect the specific areas of the brain affected by the inflammation. The range of symptoms and their rate of development vary widely and can make the diagnosis of Encephalitis difficult.
Infectious Encephalitis frequently begins with a ‘flu-like illness or headache. Typically more serious symptoms follow hours to days later. The most serious finding is an alteration in level of consciousness. This can range from mild confusion or drowsiness, to loss of consciousness, seizures and coma. Other symptoms include a high temperature, seizures (fits), aversion to bright lights, inability to speak or control movement, sensory changes, neck stiffness, or uncharacteristic behaviour.
In autoimmune types of Encephalitis people can present with psychosis and hallucinations among other neurological presentations. Sometimes these patients can be mistakenly thought to be developing psychiatric or mental health illnesses.
For a more detailed fact file on Encephalitis please see: