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Touch A Cell
A candle does not lose its light when it lights another candle!
One day a year is certainly not enough to celebrate the courage of patients, educate the public and raise 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 great joy. At the age of three, he made so many rounds in the hospital that his parents lost count. One day, her parents went to town with her and she had a seizure and was hospitalized. Her parents then realized that SS was born from the union of AS and AS.
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 funeral of two children, they begin to privately wonder if love is stronger than the pain of grief.
Ajdi was in good health until an old wound forced him to the hospital. He was examined there and said he was “sick”. As the described symptoms were foreign to him, doctors began to question his diet. Azadi from Ekiti had eaten more yams for breakfast and drank yams for lunch most of his life. Only recently did his diet change which worsened his immunity. From the research conducted, it was found that yam contains anti-sickling agent and since it is natural, it has little or no side effects. Ugwu was also discovered to increase iron production and blood count. So, what magic can a diet of yams and ugwu (small servings) do for an anemic patient?
Nigeria is blessed with many natural and human resources to sustain us, unfortunately these resources are not well researched nor are the medicinal properties of herbs and foods used to maximum advantage.
Ignorance about sickle cell anemia has led to many patients. According to Deaconess Toyin Adesola, author of Still Standing, whose parents were medical workers — a surgeon and a nurse — who married despite both having the AS genotype, “My parents got married in the 60s and no one knew about SCA at the time.” A lack of information and education about the transmission, effects and management of S-cells leads many to be reluctant to plead for a love amendment.
A few years ago, Ms. Funke Akiode, founder of Shout Global Health Inc., attended a sickle cell conference in Baltimore where she met a man known as “Baba.” Baba who was then in his 60s came to share a rare herbal recipe that became a saving grace for the children living in S-cell in his community. Not long after that, Baba transited to the great angel, but without giving the recipe to his children. Unable to find the $3M needed for research and development (R&D), Baba’s children sold this miracle recipe to business-savvy Indians. Not only did the Indians do the R&D, they needed to be on a contract basis and close to the plant properties, with a factory located in Nigeria. right or wrong; This is said to be the story of the birth of Nikosan.
The Xechem factory was commissioned by President Olusegun Obasanjo amid much media bling-bling. Commercial production started in 2006 but the drug sold at N3, 000 i.e. $20 was certainly not affordable to the average Nigerian.
But originally the indigenous Nicosan (Hemoxin in the US) formerly known as Niprisan and Nix 0699 was researched by the National Institute of Drug Research and Development (NIPRD) to become a miracle drug to save informed and financially able S-cell patients from pain and disease. Making monthly rounds at the hospital for blood transfusions or the likes leading them to lead a normal life. Unfortunately the medicine became inaccessible due to a ban on production.
Many questions come to mind – why was the original herbal recipe sold? for how much Why did Xechem’s plan to list on the US stock exchange fail? Why did Xechem USA file for bankruptcy? Has Xechem Nigeria really lost its manufacturing license? How intensive was the research to mass produce the drug? Why was the factory located in Nigeria? Answers may take years to come as many souls continue to languish in the excruciating pain that causes so many deaths around the world but the most important question we need to answer now is, why did production stop and how can production be restarted to save lives?
A loan jointly provided by Nexim, Diamond Bank and Bank PHB lifted the production of the drug by Xechem Nigeria but the delay in payment caused the donors to reconsider their investment leading to a ban on production.
With Nicosan production banned, many Nigerians living abroad with S-cells have turned to Hydroxularia – a drug for cellular abnormality diseases such as leukemia – which increases the production of fetal hemoglobin, the red blood cells needed to regenerate. Although hydroxyurea works for some, it has many side effects, including the possibility of increasing the growth of cells that can lead to cancer.
In a spirited letter to Nexim, Diamond Bank and Bank PHB – Ms. Tosin Ola, a self-described sickle cell warrior wrote, “Last month, I escaped Nicosan. Now I am in the same boat as my friends, waiting. Like a specter of doom, the evil crisis descends upon me, Afraid to get sick again, afraid to go to the hospital, because sickle cell patients are dying in the hospital from ‘complications related to sickle cell’. Rate. Not just here in the USA, but in Bahrain, Nigeria, India, Jamaica and Brazil. A big one that exists for sickle cell patients all over the world. There’s a stigma, and every time we pass a hospital we’re playing dice. With death. Why let this be our fate?”
I wonder why those in the corridors of power stand akimbo when our manpower is dwindling daily due to diseases that can be managed with locally produced drugs. It is unfortunate that foreign bodies are more concerned with health issues, which explains why initiatives for polio eradication, HIV/AIDS prevention, etc. are externally driven.
The good news is that short-term plans by Xechem Pharmaceuticals include closing the New Jersey headquarters to reduce operating costs and restarting production in Nigeria.
June 19 is World Sickle Cell Awareness Day, commemorating the date in 2008 when the United Nations General Assembly passed a resolution recognizing sickle cell anemia, one of the world’s leading genetic diseases, as a public health concern. The day provides an opportunity for everyone, especially advocates and the media, to educate people, raise awareness and remove harmful prejudices about the disease. The disease has severe physical, psychological and social consequences for affected individuals and their families.
The World Health Organization estimates that 7 million people in Nigeria are living with SCD and that SCD accounts for 5% of deaths among children under 5 years of age in some African countries. An increasing proportion of affected children are now living past age 5, with many at risk of premature death. With early detection and the use of public health interventions such as penicillin, many of these deaths could be prevented. Additionally, increased global resources and effective partnerships can reduce the burden of this disease.
Our government and indeed the health sector should seek more support to increase access to information, education, communication, management and treatment of sickle cell anemia. Increase research to determine the prevalence of SCD, develop better management guidelines, and more effectively monitor complications of the disease. Improving the proper management of sickle cell anemia requires a proactive approach to reduce mortality from related diseases. International organizations, development partners, civil society and corporate bodies should be encouraged to support the health system and provide primary health care.
So how can you celebrate the day: Raise awareness, especially through social media. Perform at your place of worship. Partner with NGOs and civil society. Educate someone or provide free information leaflets. Encourage people to get checked for symptoms, donate blood or donate money to sickle cell research. Organize a benefit event or media briefing. Lobby legislators to introduce policies that support the establishment of free clinics for poor patients. Support the patient or parent. Take a moment to reflect and pray.
SCD is an inherited group of red blood cell disorders. In people living with SCD, “sickled” or abnormally shaped red blood cells get stuck in small blood vessels and block the flow of blood and oxygen to body parts. These blockages can cause severe pain, organ damage, and serious infections, or repeated episodes of stroke. SCD affects millions of people worldwide and is particularly common among blacks.
The specific objective of World Sickle Cell Awareness Day 2011 – to educate and unite – is to achieve United Nations Millennium Development Goal 4 to reduce child mortality by 2015.
Ms. Tosin Ola charged: “The power of intercessory prayer and shared universal consciousness is real, so please lift up all our brothers and sisters. Many of us are in pain, in pain or in hospital, and we can do it. Everyone needs some good wishes and love. .”
To all our loved ones living with s-cell, I admire your courage and I pray that God gives you the mental strength to survive from anemic cell. Together we can change the face of sickle cell.
Annie Muivah is the Project Director of Care Global Network. This article was also published in Panch Patrika dated 22.06.11.
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