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Every month we are going to look at some of the conditions which potentially could fit under the category of a hidden condition or a disability.
Every month we are going to look at some of the conditions which potentially could fit under the category of a hidden condition or a disability.
April : Parkinson's
April : Parkinson's
This month to coincide with Parkinson's Awareness Month and Day in April, Able is going to discuss Parkinson's Disease. Parkinson's is also a Charity Partnership of NEXT with one of Comittee Members Genna an Ambassidor for Parkinsons. To view Genna's story click here.
Let's look at some facts and stats...
Parkinson's is the fastest growing neurological condition in the world, and currently there is no cure.
1 in 37 people alive today in the UK will be diagnosed with Parkinson's in their lifetime.
Estimates show that around 145,000 people live with a Parkinson's diagnosis in the UK in 2020.
Broken down that is, England 121,000, Scotland 12,400, Wales, 7,600 and Northern Ireland 3,900
With populaton growht and ageing, this is likely to increase by a fifth, to around 172,000 people in the UK by 2030.
Every hour, 2 more people ar diagnosed. That is the same as 18,000 every year.
The number of people with Parkinson's under the age of 50 is 1.2%, its rare but it can happen
The biggest age group to be affected by Parkinson's are those between the age of 70-79
More men than women get Parkinson's - there is no scientific evidence to suggest why this is, however it is thought that it may be due to a combination of biological factors such as hormones or genetics, as well as lifestyle factors.
Parkinson's has four main symptoms which include the following:
tremors, this can be in the hands, arms, legs, jaw or head
muscle stiffness where muscle reamins contracted for a long time
slowness of movement
Impaired balance and coordination, sometimes leading to falls.
The symptoms of Parkinson's usually begin gradually and worsen over time and often begin on one side of the body.
What Causes Parkinson's
The most prominent signs and symptoms of Parkinson's disease occur when the nerve cells in the basal ganglia, an area of the brain that controls movement, become impaired and/or die. Normally, these nerve cells, or neurons, produce an important brain chemical known as dopamine. When the neurons die or become impaired, they produce less dopamine which causes the movement problems associated with the disease. There is no known cause as to why the neurons die.
Diagnosis of Parkinson's Disease
There are currently no blood or laboratory tests to diagnose non-genetic cases of Parkinson’s. Doctors usually diagnose the disease by taking a person’s medical history and performing a neurological examination. If symptoms improve after starting to take medication, it’s another indicator that the person has Parkinson’s.
A number of disorders can cause symptoms similar to those of Parkinson’s disease. People with Parkinson’s-like symptoms that result from other causes, such as multiple system atrophy and dementia with Lewy bodies, are sometimes said to have parkinsonism. While these disorders initially may be misdiagnosed as Parkinson’s, certain medical tests, as well as response to drug treatment, may help to better evaluate the cause. Many other diseases have similar features but require different treatments, so it is important to get an accurate diagnosis as soon as possible.
March - Down's Syndrome
March - Down's Syndrome
March is where we are going to get educated on what Down's syndrome is as our disability of the month. Down's syndrome is when you are born with an extra chromosome. This usually happens by chance because of a change in the sperm or egg before birth.
People who have Down's syndrome will hae some level of leaning disability. This means they will have a range of abilities. Some people will be more independent, whilst others may need more regular care. But just like everyone else, people who have Down's syndrome have
their own personalities
things they like and dislike
things that make them unique and who they are.
Did You Know?
Around 1 in every 1000 babies are born with Down's syndrome in the UK
There are approximately 47,000 pepole in the UK with the condition
People with Down's Syndrone are all unique individuals with their own personalities, family backgrounds and preferences which make them who they are
Although the chance of a baby having Down's syndrome is higher for older mothers, more babies with Down's syndrome are born to younger women.
Down’s syndrome is caused by the presence of an extra chromosome in a baby’s cells. Down’s syndrome usually occurs because of a chance happening at the time of conception.
Down’s syndrome occurs in all races, religious and economic situations.
Down’s syndrome is not a disease. People with Down’s syndrome are not ill and do not “suffer” from the condition.
People with the syndrome will have a learning disability. The learning disability affects a person’s ability to learn, it does not mean they cannot learn.
Like most of the population, people with Down’s syndrome learn at school, have interests, hobbies and talents, have friends and relationships.
Today the average life expectancy for a person with Down’s syndrome is between 50 and 60 with a small number of people living into their seventies.
Over the last few years, people with Down's syndrome have smashed the stereotype, showing that there is nothing they cat do. How many of the Rocking People do you recognise below??
Sujeet Desai
The first musician with Down syndrome to play at Carnegie Hall. He has mastered seven instruments which are the bb clarinet, bass clarinet, alto saxophone, violin, piano, trumpet, and drums; and performed in almost every state and in 13 countries. Desai won many awards, including the Achievement Award on United Nations International Day of Disabled Persons, the World Down Syndrome Day Award from Down Syndrome International, and the Thank You Award from Special Needs Families Developmental Center in Dubai. Due to his many accomplishments, he has received major media attention throughout the years, with two documentaries under his belt in addition to features on The View, 20/20, The Oprah Winfrey Show, The Wall Street Journal, and New York Times.
Thomas Jessop, one of the first actors with Down's syndrome to start in a prime time BBC drama, the first professional actor with Down's syndrome to tour theatres as Hamlet and the first to become a full voting member of BAFTA.
Sarah Gordy MBE, a British actress who has Down's syndrome. Best known for her roles as Katie Thorne in The A Word, Orlando Quine in Strike, The Silkworm, Lady Pamala Holland in the BBC TV series of Upstairs Downstairs and Lucy Craddle in the Long Call.
Madeline Stuart is widely known as the first professional model with Down syndrome. She became the second person with Down syndrome to walk at New York Fashion Week in 2015 (after Jamie Brewer) and has been steadily invited to catwalks ever since. She participated in Paris Fashion Week, London Fashion Week, and various other shows around the world. For her success, Stuart has been profiled in both Vogue and Forbes.
Off the runway, this Australian model also started her own fashion line, 21 Reasons Why, and has completed the Special Olympics triathlon three times.
The first CBeebies presenter with Down's syndrome George Webster started with the channel in September 2021. He loves to dance!
February: Marfans Syndrome
February: Marfans Syndrome
The weather doesn't seem to get any warmer!!! But as we move into February, we have another condition which we are going to look at....have you ever heard of Marfan's Syndrome?? Travelling frequently unnoticed through everyday life, is a potentially fatal condition. which affects the body's connective tissue. The condition affects 1 in 3000 people with approximately 18,000 people living with the condition, it is thought that many remain dangerously undiagnosed.
So what is Marfan Syndrome? Put simply in Marfan Syndrome, the body is missing the glue that binds it together, weakening the cells that form its structure. The condition can affect three main systems - the skeleton, the eyes and most life threatening....the heart. The condition is not selective and can affect any gender or ethnicity. The severity varies from person to person. Around 75% of patients inherit the condition, whilst 25% occur as a result of a spontaneous (new) gene change). The American Actor Vincent Schiavelli, (starring in the Patrick Swayze movie Ghost) has Marfan Syndrome.
Signs, Symptoms, and Sailient Features of Marfan Syndrome
The syndrome can manifest in many disparate ways, which sometimes makes it difficult to diagnose. But there are classic characteristics which are easy to recognise once they are known. By virtue of the weakened connective tissue, everything in the Marfan body is stretchier, and patients often grow to excessive height while remaining very slender. Limbs and fingers are disproportionately long, the sine is sometimes curved and the chest can protrude inwards, or stick outwards.
Musculo-skeletal problems are common and troublesome in MFS, with patients often growing to excessive height with long fingers and hammer toes while developing curvature (scoliosis/kyphosis/lordosis) of the spine. Skeletal problems also involve abnormally shaped chest (pectus deformity) and loose joints, often causing pain and dislocation.
Eyes - people with Marfan Syndrome are generally myopic, with some experiencing dislocation of the ocular lens and retinal detachment. Strabismus (squint) and glaucoma are also ocular signs.
Heart - ballooning and potentially fatal tearing of the aorta and backward billowing of the heart's valves. These symptoms can cause death at an early age unless diagnosed in good time and treated medically and surgically.
Dental - a high arched palate and crowding of teeth with a history of tooth extraction.
Skin - the lack of elasticity in the skin in Marfan Syndrome means that patients often develop stretch marks in odd places such as on the back.
Every aspect of Marfan Syndrome is treatable. For more information please visit the Marfan Trust at www.marfantrust.org.
January: Sight Loss
January: Sight Loss
Wow 2023 came pretty quick January has lots of awareness days in it, however for January 2023 we are going to look at sight loss. World Braille Day is on the 4th January and you might be thinking ....well what is this all about. The inventor of Braille Louis Braille was born on this day in 1809 in France. He became blind after a childhood accident but adapted to a new way of living by developing a reading and writing system which is widely used today. With the increase of audio books, transcriptions it has been argued that Braille is not as widely used as it once was, however the bigger picture is that still in 2023 visually impaired and blind people still struggle with accessibility which then limits freedom of choice. Here at NEXT we have developed a slight loss hub which has lots of useful information which can provide guidance on how to support colleagues and customers alike. This can be found at https://able.go.next/resources/disability-resources/sight-loss-learning-hub. In this section we are going to focus on the use of aids to support visually impaired people. What do the different colours of canes mean...why do assistance animals wear coats?? Look no further, we are about to go through the various canes and explain what their significance is.
The symbol cane. These canes are smaller than other types of mobility cane and are used to notify the general public that the person has a visual impairment. Since it is so small, it offers no protection from your environment around you and will usually be used if the person has a lot of residual vision left.
Guide canes are longer than a symbol cane and are used for basic protection, they will hit objects in your environment before you do. They do require training to be effectively used when out and about.
The long cane as the name suggests, is the longest cane currently. It is used to test the environment around you if you have limited or not vision. The way this one differs from the Guide Cane is that a long cane has a tip of some kind. There are two different kinds of tips; rolling tips and pointed tips. Rolling tips are best for smooth pavements and offer the largest amount of protection as they never leave the ground. This can lead to their downfall however; if they get trapped by uneven ground or other objects such as bikes then they can jar your arm and impact your stomach. These are either cricket ball shaped, or more cylindrical. Hard tips are best for rough pavements, as these are used when tapping the ground as opposed to rolling across it.
Red striped canes signifies that the person also has a hearing impairment as well as a visual impairment, this can be on any of the canes mentioned above.
The final type of cane is a support cane which is normally prescribed by an Occupational Therapist and is measured so that the right length is prescribed for the physical impairment. If you have a sight impairment then the cane will be white and if it has red stripes then the person as mentioned above will also have a hearing impairment.
As well as canes which are used as aids to support visually impaired people, there are also assistance animals which can help. Historically, this normally used to be dogs only, however more recently a variety of pets have been trained to offer support to their owners who have visual impairments and other conditions live independently. By law assistance dogs are allowed to enter any retail establishment, taxis, entertainment places and by refusing this is a breach of the Equality Act 2010. Even though some assistance dogs may not wear them, below are some of the most common ones you may see. In addition, even though there is this temptation to go and stroke or pet an assistance dog, whenever they have their coat on, they are working and should not be approached unless the owner gives permission.
Animals who wear burgundy jackets are those who provide support for adults with hearing impairments.
Animals who wear a white harness with yellow fluorescent stripes are for young people and adults who are blind or partially sighted.
Dog AID (Assistance in Disability) are animals who wear red jackets. Dog AID animals are for physically disabled adults.
Canine Partners wear purple jackets. These animals also support adults who are physically disabled.
Support Dogs wear blue jackets. These are assistance animals for physically disabled adults, seizure alert animals for conditions like epilepsy and autism assistance dogs for children with autism.
Dogs for Good wear green jackets. These are also assistance animals for people with physical disabilities or children with autism.
Medical Detection Dogs wear red jackets. These are animals for adults and children with complex health conditions.
December: HIV and Aids
December: HIV and Aids
With December the 1st being World Aids Day, December's disability of the month is HIV/Aids which is an automatic disability under the Equality Act 2010. HIV (human immunodeficiency virus) is a virus that attacks the body’s immune system. If HIV is not treated, it can lead to AIDS (acquired immunodeficiency syndrome), which has no effective cure, therefore once people get HIV, they have it for life. With developments in medicine, and with the right medical care, HIV can now be controlled which means that people who have the condition can live long, healthy lives. The only way to know if you have HIV is to get tested. Knowing your HIV status helps you make healthy decisions to prevent getting or transmitting HIV.
As discussed HIV is regarded as a disability under legislation therefore people who have the condition can work with reasonable adjustments if needed with the same protections as anyone else who is disabled. It is vital that we become more aware to end the stigma which was historically associated with this condition.
Facts & Stats
Facts & Stats
In 2021, 2955 people where newly diagnosed with HIV in the UK of whom 90% were diagnosed in England. For the UK this is a 0.2% fall from 2961 in 2020 and a 33% fall in 2019.
Most people have flu like symptoms within 2-4 weeks of infection. But having these symptoms alone does not mean you have HIV.
HIV is not transmitted by air, water, insects or pets. Even sharing a drinks cup with someone doesn't cause transmission.
November: Endometriosis
November: Endometriosis
Endometriosis is a long term condition where cells like the ones found on the lining of the uterus are found outside of the uterus. Each month, these cells react in the same way to those in the uterus, building up and then breaking down and bleeding. Unlike the cells in the uterus that leave the body as a period, this blood has no way to escape. This can cause inflammation, pain and the formation of scar tissue.
Endometriosis can affect women and those assigned female at birth from puberty to menopause but may persist after the menopause. While some with endometriosis experience severe, life impacting pain and/or infertility, others have no symptoms at all.
Endometriosis can be classed as an invisible disability.
Facts & Stats
Facts & Stats
Severe period pain is not 'normal'
8 to 10 years is the average time from onset of symptoms to get a diagnosis.
There is approximately 176 million women, girls and those assigned female at birth of reproductive age worldwide.
38% are concerned about losing their job because of the effects of endometrisosis.
Infertility is experienced by 30-50% of those with endometriosis.
Pregnancy does not cure endometriosis.
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