It’s the end of March… do you know it is Ovarian Cancer Awareness Month

To finish the end of this month I have designed an infographic for Ovarian Cancer. It doesn’t tell everything, but at least it has some information on it and it may provoke a few thoughts and most importantly get the message out there that March is Ovarian Cancer Awareness Month.

It’s the the end of March… do you know it is Ovarian Cancer Awareness Month?

Whether you did, or you do now, please pass it on.

March is Ovarian Cancer Awareness Month

As the daffodils sway in the wind, dancing together with their beautiful bright heads on strong green stems bring together your thoughts of women’s health and for this month of March is Ovarian Cancer Awareness Month. Ovarian Cancer is the sixth most common cancer in women. In the UK there are approximately 21 new cases of ovarian cancer diagnosed every day. Despite survival rates increasing only 35.3% women diagnosed with ovarian cancer survive their disease for ten years or more. Further research and early diagnosis would help improve this survival rate. Early Diagnosis helps with survival rates, many women unfortunately do not know the symptoms, help them help themselves let them know March is Ovarian Cancer Awareness Month.

Photo by makefuneoflife.net

Ovarian Cancer Symptoms

Most Common:

Persistent Bloating

Feeling Full

Needing to wee often

Stomach Pain

Other Symptoms:

Unintentional weight loss

Tiredness

Post-menopausal vaginal bleeding

Back pain

Indigegstion

Changes in bowel habit

Pain during sex

Early diagnosis is imortant

Please seek medical advice if you have any of these symptoms or are worried. Speak to your GP. Early diagnosis of ovarian cancer is a game changer. When a person is diagnosed with stage 1, they generally have a 90% chance of surviving five years or more. However if they ignore the symptoms and the cancer is diagnosed at an advanced stage the survival rate is reduced to a staggering 4%. Quite often cancers have spread due to being overlooked or misdiagnosed, when they have metastasised, the cancer becomes more difficult to treat and treatment options become more limited, thus survival rates drastically lower. Hence early diagnosis is important giving the opportunity of providing the best possible care and improving cancer outcomes.

If you are going to read and share one thing this month, please let it be this. Let others know this Mother’s Day Month of March it is Ovarian Cancer Awareness Month.

If you would like to read further you can read at:

Cancer Research UK

Ovarian Cancer Action

World Cancer Day is 4th February

With 10 million people dying every year cancer is the second leading cause of death worldwide. Female breast, lung, prostate and colorectal are the most common cancers globally. According to The World Health Organisation in 2022 there were over 22 million new cancer cases worldwide with 9.7 million deaths. 70% of these deaths happen in low to middle income countries. World Cancer Day is 4th February, the theme for 2024 is close the care gap. The first World Cancer Day was in 2000 and has been led by The Union for International Cancer Control (UICC) every year since. The UICC believe that access to life-saving cancer diagnosis treatment and care should be equitable for all; regardless of where a person lives, how much they earn, whatever their ethnicity or gender.

Risk Factors

Over 40% of cancer related deaths could have possibly been prevented. These deaths are associated to modifiable risk factors such as alcohol consumption, lack of physical exercise, smoking, and poor diet.

Prevention

One third of deaths related to cancer can be prevented through people attending Cancer routine screening programs such as breast screening, cervical, and bowl, and finding cancer early and treating it quickly and effectively.

Impact of World Cancer Day 2023

In 170 different countries there were over 25,000 press articles

Over 850 events took place in 102 countries

There were over 430,000 Social Media Posts

Over 60 Governments actively took part

February 4th is a day like any other, however this Sunday in 2024 it is World Cancer Day an international day raising awareness of cancer and encouraging prevention, detection and treatment. Happy World Cancer Day.

Rare, Genetic and Terminal: Huntington’s Disease

I first recall chatting about Huntington’s Disease ((HD) when I was approaching my teenage years. Josie diagnosed with it was a beautiful lady inside and out. I was privileged to spend time with her, she was brutally honest and told me she loved my honesty in asking questions and not hiding fears, anxieties or any questions I had. She explained as the disease progressed her speech would deteriorate and most likely no-one would understand her talking despite the fact she would be able to hear and understand everything. The one eventuality she dreaded was being a prisoner in her own body. She laid her hand on mine, my heart beating so fast and loud, I could feel it thumping so hard and echoing in my ears. She asked “you will still talk to me”. I took her hand with my other and said, “of course I will”. That day by listening I learnt a lot physically and emotionally about this disease, that it is Rare, Genetic and Terminal: Huntington’s Disease.

Neurons in Huntington’s.3D illustration showing amyloid plaques in brain tissue, neurofibrillary tangles and destruction of neuronal networks.Stock photo courtesy of Create.vista.com


Neurons in dementia. Alzheimer’s disease, Huntington’s disease. 3D illustration showing amyloid plaques in brain tissue, neurofibrillary tangles and distruction of neuronal networks

So what is Huntington’s Disease? It is a devastating rare hereditary disorder of the brain. The chances of getting diagnosed is 50% if you have a parent with the disease. It affects the nervous system of the body; the network of tissues in the brain and the spinal cord that coordinates your body’s activities. Everyone with Huntington’s through time will deteriorate physically, cognitively and emotionally. Till eventually they are fully dependent on the help of others, whether it is family, carers or nursing staff; or a mixture of all. Symptoms usually rear their ugly head between the age of 30 and 50 years of age, with symptoms getting worse over a period of 10 to 25 years until the person dies. Huntington’s affects between 1 and 10,000 and 1 in 20,000 people in the Uk. Unfortunately, as yet there is no cure and very little awareness.

Charities throughout the UK try their best to raise awareness, offer support those affected, etc. The Huntington’s Disease Alliance UK and Ireland ran a campaign in May 2023, HD awareness month. The campaign Family Matters. The Alliance consists of four independent charities throughout the UK and Ireland. The four charities all have the same goals and strive to help those affected by the disease, promote awareness and do their best to increase the understanding of UK wide of Huntington’s Disease. You can find a relevant organisation in your area:

@HDA_tweeting - England and Wales

@ScottishHD

@HDAAssocNI – Northern Ireland

@HDAI_ie – Ireland

Charities like these are important to get the message out there. Also to help those living with the illness, offer support, put you in the right direction in a time of need. The Scottish Huntington’s Association avidly campaigns for Huntington’s disease charities. Olympic medalist and double world champion rower, Sarah Winckless is patron. Huntington’s is in Sarah’s family on her Mum’s side. Sarah herself has tested positive for the gene. 

Josie gave birth to four children before her HD diagnosis. As statistics go their family came out on the button. The first two children tested negative for the gene, child three and child four both tested positive. Despite receiving the news of having this cruel debilitating condition the siblings both had a glass half full attitude. That zest for life and wanting to live and enjoy each day as independently as they could for as long as they could. As time goes on life becomes a struggle; food becomes an enemy through the fear of choking, talking to strangers lessens from the embarrassment of not being understood. For many this can lead to isolation.

This disease changes the daily life of everyone that is affected with it. The person diagnosed is eventually trapped in their own body; forced to accept help from others, both physical and emotional. Even the fittest and most ambitious of us, as times goes by, our bodies get consumed by HD. Families and friends do their ultimate best to help care. However at times they feel the pressure and need reassurance; we need to remember they too are fighting their own battle. Living with Huntington’s Disease not only affects the person with the disease but those living around them. It can have a massive impact on those who live in the home. When symptoms start to worsen and physical symptoms begin to progress equipment invades the house. Yes it’s a fabulous help, but at the same time another tick of the box that the disease is progressing in the direction you were hoping would take a little longer. 

Living with HD is not the same for everyone; for those affected severely with swallowing a tube feed is often fitted, some have involuntary movements, mood changes. Anxiety and depression are common with people affected with Huntington’s disease.

If you knew very little about HD I hope reading this short post has given you an insight and you have an idea of how this crippling disease not only takes over the body but haunts the minds of those affected. 

I have rarely met a person with Huntington’s that has been a complainer in life.They have such a hard deck of cards to deal with in life and yet always seem to make the most of it.

So while you may have winged about being trapped in your four walls for a few weeks or even months due to Government restrictions during COVID, remember the people that are fighting a battle all the time.

Biomarker blood test for early Alzheimer’s diagnosis

At last there is heartening news published in JAMA Neurology on Monday 22 January 2024 regarding the early diagnosis of this incurable disease Alzheimer’s. The research was led by Nicholas Ashton, PhD, a professor of neurochemistry at The University of Gothenburg in Sweden. The study found that the blood test was up to 96% accurate in identifying elevated levels of beta-amyloid (another hallmark of Alzheimer’s) and up to 97% accurate in identifying tau.

“This project – which is thanks to £5m in funding from players of People’s Postcode Lottery – will gather the information needed to introduce a blood test for dementia into UK healthcare systems. This blood test would be a crucial step in speeding up how quickly and how early we are able to diagnose dementia”

Dr Richard Oakley, Associate Director of Research and Innovation at Alzheimer’s Society

The current protocol for diagnosing Alzheimer’s is a PET Scan and lumbar puncture to detect signs of progression of the disease. Whilst both procedures are not life threatening they can be slightly invasive, take time and come at a cost in man power, machinery and monetary terms to the NHS.

Since Ashton’s study showed that the protein phosphorylated tau (p-tau2) is clearly accurate this could mean there will soon be a key biomarker blood test for early Alzheimer’s diagnosis. Offering an affordable and hopefully easier way to diagnose the disease.

This physical illness damages a person’s brain. Through time the Alzheimer’s disease causes dementia. As the disease progresses the person affected will rely on more support until one day becoming Almost totally dependent on others.

“This is an excellent study and brings us very close to a blood test for Alzheimer’s disease that can be used in daily practice.”

Prof Bart De Strooper, Professor of Alzheimer’s Disease research at UCL

Motor neurone disease – devastatingly incurable

For some people on receiving their diagnosis of motor neurons disease (MND), they are already showing symptoms of a rare condition that will eventually end their life.  With a chance of 1 in 300 in getting MND and affects around 5000 adults in the UK at any one time.  This life limiting condition with progressive symptoms has no cure. Receiving a diagnosis of motor neurones disease – devastatingly incurable. Those words echo in the consultation room, life as once was for many so quickly changes.  Many people with MND have complex needs, varying depending on the person.  The condition reduces life expectancy with only 10% of people with MND living 10 years or more.  After receiving a diagnosis life expectancy of MND is one to five years.  Unfortunately, one third of people diagnosed with the condition only live for a year and more than half die within 2 years of being told they have motor neurones disease. Getting a diagnosis and living with motor neurones disease – devastatingly incurable.

MND is the name given to a group of illnesses which affect nerves called motor neurones in the brain and spinal cord. They help tell muscles what to do.


If a person has MND, their movement is affected.

Signs and Symptoms

  • Spontaneous twitching
  • Fatigue
  • Muscle cramps
  • Speech and swallowing difficulties
  • Weight loss
  • Shortness of breath  

Living with this debilitating condition weakens the muscles and eventually paralysis. Scientists, neurologists are doing everything in their power to develop clinical trials to research the disease. Hoping to make life easier for people with MND and the ultimate aim to find a cure.

In June 2023 the UK Government announced to continue funding for research for motor neurone disease, pledging £50 million to be used throughout the UK.

Scientists carrying out research at University College London have shown hundreds of proteins and molecules are found in the wrong place in nerve cells affected by MND.

Living with MND is a real game changer. Research into this devastating disease is needed to find the cure that is desperately needed. The hard work that has already gone into research could not be done without the dedication, awareness and money from all who have done so so far. Although there is no cure focussing on helping manage a better daily life for those affected is a goal. From research scientists are gaining an understanding has improved why MND surfaces in neurones and brain tissues.

Hopeful new treatments

University College London – discovered a biomarker; diagnostic test for ALS in early stage clinical trials

UK DRI Edinburgh – Dr Bhuvaneish Selvaraj and Professor Siddharthan Chandran discovered discovered that dysfunctional axons that connect nerve cells to muscles have a role in MND. They were able to show how they could restore function to the axon by boosting a cell’s mitochondrial or natural energy supply. The team hopes these findings will pave the way for new therapies that boost mitochondrial function.

Raising awareness

The work of the scientists is groundbreaking and a must. Awareness is the key to many factors. It helps those affected with the condition in knowing they have support as well as if there is literature out there that people can access, those affected feel they perhaps do not need to repeat the chat over and over again. Stephen Hawking the scientist was diagnosed with MND; he lived for an amazing 55 years with the common type  amyotrophic lateral sclerosis (ALS). Fellow Scot, Scottish rugby union player, sadly passed away now, was diagnosed with MND; set up charity My Name’5 Doddie Foundation Diagnosed with MND Rob Burrows, former England rugby league player who does so much still to raise awareness. There are so many people affected with MND that raise awareness; whether, you are running a marathon, holding a cake sale, walking the dog, raffling off a bottle of whisky, or a sponsored silence. It all contributes.