Raising Awareness of Chronic Immunological and Neurological Diseases (CINDs)

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Highlights:

• International awareness day for chronic immunological and neurological diseases is observed annually on the 12^th May to raise awareness about these chronic and disabling conditions.
• These are progressive conditions leading to severe disability and unfortunately often go misdiagnosed because the symptoms are highly non-specific.
• Chronic Immunological and Neurological Diseases (CINDs) include fibromyalgia and myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) among others.

International Awareness Day for CINDs - History

The International Awareness Day for CINDs was first established in the year 1992. This year marks the 26^th anniversary of the event.

The idea of a CIND awareness day was mooted by Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases), who was based in the US, but believed that it had to be an international event in order to be successful.

‘It is important to create awareness of these "not so obvious" chronic immunological and neurological disabilities that seriously impact the quality of a patient's life.’

The date 12^th May was chosen as it coincided with the birthday of Florence Nightingale, the English military nurse who inspired the establishment of the International Red Cross. Sadly, Nightingale became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome- like condition. She was mostly bedridden during the last 50 years of her life. Inspite of having a crippling condition, she managed to establish the world's first School of Nursing.

Mr. Hennessy included several conditions namely, ME/CFS (also known as Chronic Fatigue and Immune Dysfunction Syndrome -- CFIDS), Fibromyalgia (FM), Multiple Chemical Sensitivity and Gulf War Syndrome under the CIND umbrella. These illnesses are marked by chronic muscle and joint aches, extremely low energy levels, cognitive impairment and various other symptoms. CINDs affect millions of persons around the world. Their cause is not clear and there is no cure.

What We Can Do To Raise Awareness About CINDs

There are several ways in which we as individuals can do our bit to create awareness about CINDs so that more persons become aware and seek help. Also money raised during this campaign could fund research on CINDs, about which little is known.

• Using social media platforms such as Facebook and Twitter to share inspiring and catchy messages and pictures and colored ribbons representing these illnesses, namely -
• Purple ribbon - Fibromyalgia (FM)
• Blue ribbon - Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)
• Green ribbon - Multiple Chemical Sensitivity (MCS) or Lyme disease
• Make custom designed T-shirts with the CIND logo or ribbon printed or pasted on it using a hot iron. These can be sold and the proceeds donated for research.
• Collect money from individuals and corporates to ME/CFS or FM charity. Make a personal contribution.
• If you know someone who writes a blog, ask them to write about this condition and raise awareness
• If you have CIND, join a support group and share as well as learn from other patient's experiences.
• Create awareness by organizing a program on the radio or television and inviting an expert or a patient having the condition speak about the condition and share their story.
• Do a write-up in the local newspaper about the condition or share an inspirational story of someone who has overcome their disability to lead a fulfilling life.
• Involve the local administration and ask them to pledge their support for the campaign organized in the community.
• Light up some prominent buildings with the CINDs logo or display messages prominently.
• Organize a walk or march in your neighborhood to raise awareness about CINDs.
• Ask the local library to display your message prominently and display books about ME/CFS and FM.

Every little gesture or contribution will go a long way in making a difference. Start today and do your bit to help persons suffering from CINDs.

About Chronic Immunological and Neurological Diseases - In Brief

1. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

The condition affects close to 2.5 million Americans, however the condition remains misdiagnosed in many

• Extreme fatigue and tiredness resulting in inability to carry out daily activities
• Unrefreshing sleep
• Cognitive impairment
• Worsening symptoms when a person stands up
• Symptoms that worsen after physical or emotional exertion

2. Fibromyalgia

• Affects nearly 5 million Americans above 18 years, and the majority are women
• The exact cause of fibromyalgia is unknown
• Common symptoms include headaches, pain and tingling in the hands and feet and sleeplessness (insomnia)

3. Other Diseases Under the CIND Umbrella

• Alzheimer's disease
• Autism
• Celiac disease
• Multiple sclerosis
• Ulcerative colitis
• Crohn's disease
• Parkinson's disease
• Postural hypotension tachycardia syndrome (POTS)
• Irritable bowel syndrome
• Epilepsy
• Chronic myofascial pain
• Lupus
• Lou Gehrig's (ALS)

Reference:

1. International Awareness Day for Chronic Immunological and Neurological Diseases - (https:yourhealthlink.health.nsw.gov.au/event/international- awareness-day-chronic-immunological-neurological-diseases/)

Source: Medindia

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