GUEST contributor Katrina Smathers writes about the death of her mother Carol Zimmermann and the dreadful disease which took her life

My name is Katrina and I am struggling to come to terms with the loss of my dearly loved mum, Carol Zimmermann, to suspected Creutzfeldt-Jakob disease (sCJD).

My mum was a beautiful woman, very active within her community, church and a volunteer member with Tenbury Transport Trust and the Regal Cinema.

She always offered a shoulder to cry on or an ear to listen to the less fortunate or broken-hearted.

Her smiling face and loving soul will be greatly missed by her family and friends.

My Mum was diagnosed with suspected sCJD, the most common form of human prion disease.

This will be confirmed by autopsy and genetic testing but tests indicate that she certainly did not suffer with variant CJD, (commonly and incorrectly referred to as Mad Cow disease).

There is a lack of understanding with the general population and a stigma I wish to address in regards to the term Mad Cow disease.

CJD is a rare and always fatal degenerative brain disease of humans.

CJD is one of a group of diseases known as prion disease that affects humans and animals. It does not care where you live, or what ethnic group you belong to.

Sadly anyone one of us could be affected.

In humans, CJD or prion disease affects worldwide one to two percent per head of population per year.

This disease is always fatal, extremely rapid with no treatment or cure. Average duration of illness four to six months and although this disease can affect people of all ages the most common age of onset of symptoms is 55 to 70.

Prion diseases are divided into three main categories:

1. Sporadic CJD (sCJD) – no known cause 85 to 90% of cases

2. Genetic or inherited forms of CJD and other prion diseases - 10 to 15% of cases which include

- familial CJD (fCJD)

- Gerstmann-Straussler Scheinker Syndrome (GSS)

- Fatal Familial Insomnia (FFI)

3. Acquired forms of CJD and other prion diseases – affecting fewer than 1% of all cases

- Health Care associated or medically acquired (iatrogenic) CJD (iCJD)

Due to transmission by exposure to brain or nervous system tissue through invasive medical procedures.

- Kuru A prion disease in Papua New Guinea

- Variant CJD (vCJD) reported in 1996 due to consumption of BSE contaminated products. Variant CJD, a very rare acquired form of CJD that has only affected 230 people worldwide to date.

As I write this article, sadly here in the UK as of April 3, 2017 there have been 26 deaths of definite and probable sporadic CJD (sCJD).

The University of Edinburgh CJD Research and Surveillance Unit is working towards finding what causes CJD, how they can prevent it and working towards faster and more accurate ways of diagnosing CJD in life, too.

If you can help please make a donation, a cheque written to "University of Edinburgh" and address it to:

The National Creutzfeldt-Jakob Disease Research & Surveillance Unit

Bryan Matthews Building

Western General Hospital

Crew Road

Edinburgh EH4 2XU

If you are interested in learning more about this fatal disease please go to the University of Edinburgh website at www.cjd.ed.ac.uk or the CJD Support Network at www.cjdsupport.net