Posts Tagged ‘awareness’

Sickle Cell Support Group

Posted: April 11, 2015 by sicklecellunite in Children, Events, Sickle Cell, Support Group
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2014 Sickle Cell Advocate of the Year

Posted: March 4, 2015 by sicklecellunite in Sickle Cell
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Presented by Sickle Cell 101

The Sickle Cell Advocate of the Year is an annual award presented by Sickle Cell 101 to recognize one devoted Sickle Cell advocate who has excelled in Sickle Cell advocacy. The Sickle Cell Advocate of the Year inspires others to make a difference by engaging the community and promoting Sickle Cell awareness. This is someone who has gone above and beyond to advocate for Sickle Cell. The 2014 Sickle Cell Advocate of the Year will be awarded and featured on all of Sickle Cell 101’s social media pages (Facebook, Instagram, Tumblr, etc.) and in the One-Oh-One newsletter.

Follow the link below:

https://docs.google.com/forms/d/1SPZdOEHijaLxnjIqfUBsV8lJexScjout3uDeAlhCpKA/viewform?c=0&w=1

Sickle Cell Frequently Asked Questions

Why is Sickle Cell Anemia only found in Black people?
This is a very common mis-conception. Sickle cell anemia (sca) is not “only found in Black people”. White people in Greece, Sicily, Turkey, and their offspring around the world suffer from sickle cell anemia (sca). In fact, the highest incidences of the sickle cell gene (S, for short) are not found in Africa at all; they are in India and Saudi Arabia [References 1 to 10].

Why do people with sickle cell anemia not suffer from malaria?
A common mis-conception. A dangerous misconception. People with sickle cell anemia do suffer from malaria, and very badly too. Doctors who have been wrongly taught have been known to advise their sickle cell anemia patients traveling from Europe to the Tropics not to bother taking anti-malarial tablets because the sickle cells make them immune to the parasite. Dangerous advice, as malaria is the commonest cause of sickle cell crisis in Africa [ See also Question 8. References 9, 11 to 14, 21 & 22].

Why then do Science teachers always talk about malaria protection in sickle cell anemia?
Inadequate knowledge, or plain ignorance is the simple answer. I repeat: malaria affects sickle cell anemia patients more seriously than it does others. A sickle cell anemia child is one who has inherited sickle cell genes from both parents [S from father, and S from mother] producing the phenotype SS, which I have come to call ACHE-ACHE, that is one ACHE gene from father, and the other ACHE gene from mother. No one aches in the rainy season with just one ACHE gene. To suffer from cold season rheumatism, there must be contributions of ACHE from both parents. A child inheriting a sickle cell gene [S] from just one parent, and a normal hemoglobin gene [A] from the other parent is called Sickle Cell Trait [AS phenotype], which for simplicity sake I have come to call NORM-ACHE. This AS child does not have sickle cell anemia SS, and reacts to malaria differently.

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Not everything going on in our bodies is related to sickle cell! Sometimes something else may be wrong and the docs tend to focus only on sickle cell. When in doubt, always ask for a second opinion or a specialist in the area of concern. We have a very good health care system, and if you didn’t have sickle cell, you would be seeing a specialist for that weird feeling you are having. Please don’t assume everything is always due to sickle cell! We are still human and may have other health issues too. Even if your doctor doesn’t take it seriously, please push until you get a real answer. Your body warns you that something is wrong through pain, and if it doesn’t feel like usual sickle cell pain, it may not be. It’s better safe than sorry. This can save your life!

 

Source:http://sicklecellwarriors.com/its-not-always-sickle-cell/

A recent argument in another sickle cell group inspired this post. Someone asked if Sickle Cell was a form of cancer. Most answers were no, including mine. I think since it’s now being treated with Hydroxyurea (which is used for cancer patients) they are thinking it’s a form of cancer. Hydroxyurea increases fetal hemoglobin production and slightly raises the total hemoglobin concentration in the body. Fetal hemoglobin reduces the chance that red blood cells will sickle in a person who has sickle cell disease which is to prevent to pain crisis and prevent frequent hospital stays. It’s use for SC warriors who have: Frequent painful events (at least three in a year), A history of recurrent acute chest syndrome, and Severe anemia.

A to Z List of Cancers – S

Salivary Gland Cancer
Childhood
Sarcoma
Ewing
Kaposi
        Osteosarcoma (Bone Cancer)
Rhabdomyosarcoma
Soft Tissue
Uterine
Sézary Syndrome
Skin Cancer
Childhood
Melanoma
Merkel Cell Carcinoma
Nonmelanoma
Small Cell Lung Cancer
Small Intestine Cancer
Soft Tissue Sarcoma
Squamous Cell Carcinoma – see Skin Cancer (Nonmelanoma)
        Childhood
Squamous Neck Cancer with Occult Primary, Metastatic
Stomach (Gastric) Cancer
Childhood

http://www.cancer.gov/cancertopics/types/alphalist/s

I don’t see Sickle Cell listed as a cancer or a form of cancer. Do you agree that sickle cell is NOT a form of cancer?