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A candle does not lose its light by lighting another candle!

One day a year is certainly not enough to celebrate the courage of patients, educate the public and create awareness about a disease that has eaten deep into the fabric of the nation. Almost every family has a story.

Nnamdi’s birth was celebrated with pomp and joy. By the time he was three years old, he had been around the hospital so many times that his parents were exhausted. One day, his parents took him to the city and he had a seizure and was hospitalized. It was then that his parents realized that the union of AS and AS gave birth to SS.

Fola and Aminu knew they were both carriers but their love for each other was so strong that all warnings fell on deaf ears. After 10 years of marriage and the burial of a child twice, they began to wonder if love is stronger than the pain of mourning.

Ajadi was in good health until his old age wound led him to the hospital. There he was examined and told that he was “sick”. Since the types of symptoms described were unusual for him, the doctors began to question him about his diet. Ajadi from Ekiti for most of his life ate a lot of yam for breakfast and ate yams for lunch. His diet has recently changed resulting in a breakdown of his immune system. In research, it was found that Yam has anti-sickling agents and because it is natural it has little or no effect. Ugwu was found to produce iron and increase blood volume. So, what magic can yam and ugwu (small serving) do for an anemic patient?

Nigeria is blessed with abundant natural and human resources to support us, unfortunately these resources are not well researched and there are no medicinal and nutritional properties that are tied to high benefit.

Ignorance about sickle cell anemia has plagued many patients. According to Deaconess Toyin Adesola, author of the book Still Standing, her parents although medical workers – a surgeon and a nurse – got married despite both having the AS genotype, “My parents got married in the 60s and nobody knew about SCA then. .” Lack of knowledge and education about transfer, outcomes and s-cell management continues to lead many to regret soliciting love.

Some years ago, Ms. Funke Akiyode, Founder of Shout Global Health Inc, attended a Sickle Cell Conference in Baltimore where she met a man she identified as “Dad”. Baba who was 60 years old then came to share a rare vegetable recipe that has been a saving grace for children living with s-cell in his community. Soon after, Baba moved on, but without passing the recipe on to his children. Not having received the required $3M in Research and Development (R&D), Baba’s children sold this miracle recipe to business-savvy Indians. The Indians have not only received continuous R & D, they, based on the agreement and the need to be close to the botanical buildings, are located in Nigeria. True or false; it is said that this is the story that gave birth to Nicosan.

The commissioning of the Xechem plant by President Olusegun Obasanjo was made amid much media attention. Commercial production started in 2006 but the drug which sold for N3, 000 ie $20 was unaffordable to the average Nigerian.

But the original Nicosan (Hemoxin in the US) formerly known as Niprisan and Nix 0699 researched by the National Institute of Research and Development (NIPRD) became a miracle drug that prevented patients with informed and economical cells from pain and withdrawal. making monthly rounds at the hospital for blood transfusions or the like thus leading them to lead a normal life. Unfortunately, the drug has become unavailable due to the suspension of the product order.

Many questions come to mind – Why was the herbal recipe sold? How much? Why did the plans to have Xechem on the American Stock Exchange fail? Why did Xechem USA file for bankruptcy? Did Xechem of Nigeria lose its manufacturing license? How thorough was research into mass production of drugs? Why was the factory in Nigeria? Answers may take years as many souls continue to suffer from unbearable pain leading to many deaths worldwide but the most important question we need to answer now is, why was the product stopped and how can we start the product to save lives?

A joint loan provided jointly by NEXIM, Diamond Bank and PHB Bank suspended the production of drugs by Xechem in Nigeria but the payment of the payment made the suppliers reconsider their investment leading to the embargo on the product.

With the ban on the production of Nicosan, many Nigerians living abroad with s-cells have turned to Hydroxyuleria- a drug for rare cellular diseases such as leukemia- which increases the production of hemoglobin in the child, which is needed to stimulate red blood cells. Although Hydroxyuleria works for some, it has many side effects including increased cell growth that can lead to cancer.

In a spirited letter to NEXIM, Diamond Bank and Bank PHB – Mrs. Tosin Ola, a self-proclaimed sickle cell fighter wrote, “Last month, I left Nicosan. Now I am in the same boat as my friends, waiting for the problems of evil to descend on me like a vision of destruction .I’m afraid to get sick again, I’m afraid to go to the hospital, because sickle cell patients die in hospitals because of ‘sickle cell related complications’ in a shocking way. not only here in the United States, but in Bahrain, Nigeria, India, Jamaica and Brazil. There is a stigma on sickle cell patients. sickle cell all over the world, and every time we pass a hospital, we are playing dice. with death. Why are you letting this be our fate?”

I wonder why those in the power lines continue to stand akimbo while our workers die daily from a disease that can be controlled by a homemade drug. It is sad that foreign organizations are more concerned with health related issues which explains why measures to eradicate Polio, prevention of HIV/Aids etc are always carried out abroad.

The good news is that the short-term plans of Xechem Pharmaceuticals include the closure of the New Jersey headquarters to reduce operating costs and the introduction of production in Nigeria.

June 19 is World Sickle Cell Awareness Day, an event that commemorates the date in 2008 when the United Nations General Assembly adopted a resolution to recognize sickle cell anemia, one of the world’s leading genetic diseases, as a public health concern. This day gives everyone, especially supporters and the media, the opportunity to educate people, create awareness and eliminate harmful prejudices about this disease. The disease has devastating physical, psychological and social consequences for those affected and their families.

The World Health Organization estimates that Nigeria has 7 million people living with SCD and that SCD contributes to 5% of deaths among children under 5 years of age in some African countries. While an increasing number of affected children are now surviving past the age of 5, many remain at risk of premature death. With early detection and use of public health interventions such as penicillin, many of these deaths can be prevented. In addition, the burden of the disease can be reduced through increased global resources and effective partnerships.

Our government and the health sector must seek greater cooperation to facilitate access to information, education, communication, management, and treatment of sickle-cell anemia. Expand research to determine the prevalence of SCD, develop better management guidelines, and more effectively monitor complications of the disease. There should be an active opinion towards improving the proper management of sickle-cell anemia to reduce the mortality of related diseases. International institutions, development partners, communities and allied bodies should be encouraged to support health programs and basic health delivery.

So how can you remember the day: Raise more awareness through social media. Do a sermon in your place of worship. Cooperation with NGOs and Civil Society. Educate someone or give them a free brochure. Encourage people to get tested, donate blood or donate money to sickle cell research. Prepare a benefit program or press release. Urge lawyers to come up with policies that support the establishment of free clinics for poor patients. Support the patient or parent. Take a moment to think and pray.

SCD is an inherited group of red blood cells. In people with SCD, “sickle” or abnormally shaped red blood cells get stuck in small blood vessels and block the flow of blood and oxygen to parts of the body. These blockages can cause repeated episodes of severe pain, physical damage, and serious illnesses, or strokes. SCD affects millions of people worldwide and is more common among blacks.

The direct objective of the theme of World Sickle Cell Awareness Day 2011 – to educate and unite – is to achieve the 4th Millennium Goal of the United Nations ie to reduce child mortality by 2015.

Ms. Tosin Ola gave this charge saying: “The power of prayer and common sense in the world is real, so please lift up all my brothers and sisters. they all use good wishes and love. “

To all our loved ones living with s-cell, I admire your courage and pray that God will give you the mental strength to live without anemic cell. Together we can change the face of sickle cell.

Anne Muyiwa is the Project Director of the Cares Global Network. This article also appeared in Punch Newspapers dated 22.06.11.

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