How Common Are The Blood Disorders
- Thalassemia:. 7% of the world population carries Thalassemia/Hemoglobinopathy gene and 3,00,000-4,00,000 babies with severe hemoglobinopathies are born each year. India, Thailand and Indonesia account for 50% of worlds thalassaemia carriers, thus 50% of thalassaemia majors are born annually in these countries. There are 50 million Thalassemia carriers and over 12,000 new affected children born every year.
- Hemophilia: One in 7500 live male births and approximately 17,000 males in the U.S are suffering from Hemophilia. All races and socioeconomic groups are equally affected. In India approximately 1 in 5000 males have Hemophilia A and 1 in 30,000 have Hemophilia B. India reported cases of Hemophilia were 11586 .
- Sickle Cell Disease is common in tribal areas of MP, Chhatisgarh, Maharashtra, Gujarat, Andhra, Karnataka, Odisha and Jharkhand. Carrier rate is as high as 40% in some areas.
You Are Born With Sickle Cell Trait It Is Inherited When Only One Of Your Parents Has Passed On The Sickle Gene And Will Never Develop Into Sickle Cell Disorder
You do not have symptoms from sickle cell trait, so it is a good idea to have a blood test to see if you have sickle cell trait.
If you have the trait, the majority of red cells in the blood are normal round shaped cells. Some sickle shaped cells may be present under certain conditions.
Sickle cell trait is found in 1 in 4 West Africans and 1 in 10 Afro-Caribbeans, and is also found in people who originate from the Mediterranean, Asia and the Middle East. It is less common in white Europeans, although with the ever growing diversity of the population this will change.
Most people who have sickle cell trait are healthy. However, anaesthetics can cause problems. If you have sickle cell trait Always notify your dentist or doctor before treatment commences to be on the safe side.
There is a small chance that you may experience pain at high altitudes , including long-haul flying in unpressurised planes and mountain climbing. It is important you say you have sickle cell trait before undertaking such activities as you may need to breathe oxygen. Extreme exercise may also precipitate problems and if you are a professional athlete you should have a training programme that takes account of this.
The trait is not an illness, but if you are planning to have children, then certain factors have to be considered.
If your partner does not have sickle cell trait, then any children you have will not have sickle cell disorder, but they could have the trait .
Symptoms Of Sickle Cell Disease
People born with sickle cell disease tend to have problems from early childhood, although some children have few symptoms and lead normal lives most of the time.
The main symptoms of sickle cell disease are:
- painful episodes called sickle cell crises, which can be very severe and last up to;a week
- an increased risk of serious infections
- anaemia , which can cause tiredness and;shortness of breath
Some people also experience other problems, such as delayed growth, strokes;and lung problems.
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About Sickle Cell Disease And Disability Benefits
Sickle Cell Disease is an inherited hematological disorder in which there are abnormal mutations of red blood cells. This condition is also known by the name of Sickle Cell Anemia. In this condition, the red blood cells assume the shape of a sickle which prohibits them from passing through the blood vessels thus depriving various vital organs of the body of adequate blood that is required for normal functioning of organs and thus causing potentially disabling complications.
Applying Specific Medical Tests To Your Case
The Social Security Administration will have access to your medical records, but they may still order an examination from a doctor they employee to conduct disability examinations. The SSA will cover the costs of this exam. Sometimes mental evaluations are also ordered because certain conditions can impact stress levels, moods and cause depression as well and those things must also be considered. Any consultative examinations ordered by the SSA are not designed to provide you with medical treatment. Instead, they are designed to determine whether your claims regarding your physical limitations and capabilities and medical conditions are accurate.
The consultative examinations could include laboratory tests such as X-rays or blood work. With this particular health condition, sickle cell anemia, the doctor will be checking to determine that the blood disorder is far enough advanced that it causes you enough problems to keep you from working and doing the activities that you had done before.
You can still be determined as disabled at this advanced stage of the evaluation and determination process. With sickle cell anemia, you may experience pain, blood pressure problems and general health issues that may keep you from standing, walking, lifting or bending as frequently as someone who does not suffer from the disorder.
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Employer Guide To Sickle Cell
This guide, published by De Montfort University, is based on research examining the experiences of people with sickle cell disorder in work and employment in England. There are duties on employers under the;1996 Employment Rights Act;to provide a contract and not to dismiss employees unfairly. There are also duties under the;Equality Act 2010;to make reasonable adjustments to enable the inclusion of disabled workers in the workplace, and, since SCD disproportionately affects BME communities, not to engage in direct or indirect racist discrimination, nor in harassment/victimization. If people with SCD are given appropriate support they are able to carry out their jobs.;
Labour Kingston Upon Hull North
To ask the Secretary of State for Work and Pensions, how many people with sickle cell disease were in receipt of personal independence payments and employment support allowance or their universal credit equivalents in the most recent period for which data are available; and what the annual cost to the public purse of providing that support in each of those groups is.
Give Blood Spread Love England
Give Blood, Spread Love, England is the Sickle Cell Societys blood donation project. We work with black-heritage communities to: raise awareness of the need for ethnically matched blood to treat people with sickle cell; increase levels of confidence in giving blood and recruit new donors to the blood donation register.
Screening And Testing For Sickle Cell Disease
Sickle cell disease is often detected during pregnancy or soon after birth.
Screening for sickle cell disease in pregnancy;is offered to all pregnant women in England;to;check if there’s a risk of a child being born with the condition, and all babies are;offered screening;as part of the newborn blood spot;test;.
Blood tests can also be carried out at any;age to check for sickle cell disease or see if you’re a carrier of the gene that causes it.
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Meet The Invisible Warrior Team
|;||Louisa is a Sickle Cell Warrior. Born with sickle cell disease SS, she has been affected by the disease her whole life. Louisa is determined to share her story to raise awareness for sickle cell disease, its effects on mental health and invisible disabilities. The Invisible Warrior project is developed around Louisas life story, which she shares in our sessions and you can find in the video above.;|
|;||Linda van Keimpema is a science communicator and educator, and strategic teaching fellow at the Department of Immunology and Inflammation. Linda is Project Manager of the Invisible Warrior societal engagement project.|
The Ssa Evaluation And Medical Qualifications
Qualifying for Social Security Disability with a sickle cell anemia diagnosis by the Blue Book, the SSA medical guide for determining what classifies as a full and permanent disability, is very specific.
Sickle cell anemia falls under section 7.0 — Hematological Disorders. First, there must be medical documentation that you have been confirmed to have a hematological disorder.
- Lab report with a definitive test that establishes that there is a hematological disorder and this report needs to be signed by a physician.
- A lab report with a definitive test that determines you have a hematological disorder that is not signed by a physician, but is accompanied by a report from your physician stating that you do indeed have the disorder.
- When there is not a lab report of a definitive test, a report from a physician that is persuasive in nature that indicates your diagnosis was confirmed by diagnostic methods or appropriate lab tests.
- The Social Security Administration will make every reasonable effort to get the results on the appropriate lab testing. However, costly, complex or invasive tests, such as bone marrow aspirations or clotting-factor proteins will not be purchased.
Looking at the category of impairments for an individual with sickle cell anemia, here are the determining factors that help Social Security decide if you are disabled:
If you meet one of the three factors, you may be eligible for Social Security Disability benefits.
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Accommodating Employees With Sickle Cell Anemia
People with sickle cell anemia may develop some of the limitations discussed below, but seldom develop all of them. Also, the degree of limitation will vary among individuals. Be aware that not all people who are aging will need accommodations to perform their jobs and many others may only need a few accommodations. The following is only a sample of the possibilities available. Numerous other accommodation solutions may exist.
Please Tell Us About Your Organization And The Work You Do
National Thalassemia Welfare Society was formed by patients, parents, doctors and well-wishers in November 1991 at AIIMS. Since then it is dedicated to the cause of Thalassemia and Sickle Cell Anaemia. Around 3000 persons are members. I am a;Thalasssemialogist and the General Secretary of NTWS.
We have two prime objectives: to strive for best possible care for existing patients, and prevent future generation from menace of Thalassemia and SCD.
Our aim is to ensure ;free treatment to Thalassemics all over India. Our first success was in Delhi around 18-19 years back. Now few more states have started providing free treatment to thalassemia and SCD patients, some are providing partially.
We organize blood donation camps every year to support the blood banks. Those patients who dont get free medicines from Government, NTWS supports them to some extent. We have been regularly supporting the cost of bone marrow transplant, a permanent cure for thalassemia.
I joined Shri Javed Abidi jis cross disability movement in 1996 and campaigned to include Thalassemia, Sickle Cell Anaemia and Hemophilia in the list of disabilities. I am delighted to say that with his continuous, unconditional, untiring support and guidance now we could get these blood disorders in The RPWD Act 2016. ;
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Learn About Your Options For Getting Social Security Disability Benefits Based On Sickle
By Lorraine Netter, Contributing Author
Sickle cell anemia is a disorder in which the body creates red blood cells that are “sickled,” which means they are shaped like crescents. Sickled cells get stuck in the blood vessels and block blood flow. Sickled cells cause hemolytic anemia, a decrease in red blood cells, because they break down more quickly than regular red blood cells.
There are several types of sickle cell anemia that can be severe, including HbSS, sickle beta zero thalassemia, HbSD, HbSE, and HbSO. Other forms of sickle cell disease , such as sickle beta plus thalassemia and HbSC, tend to cause milder symptoms. Sickle cell trait is not a form of sickle cell anemia; it occurs when an individual inherits a sickle cell gene from one parent and a normal gene from the other parent. It generally does not cause symptoms or impairments.
How Does Social Security Administration Assess Disability Caused By Sickle Cell Disease
When applying for disability due to Sickle Cell Disease, the SSA will assess the documented proof of the claimantâs condition. Hence, it is absolutely vital for the claimant to have documented evidence of the diagnosis of sickle cell disease made by the treating physician. There should also be documented evidence of the treatments that the claimant has gone through and how compliant has the claimant been with the treatment recommendations. There should be documentation of any hospitalizations that might have been required to treat the condition. Most importantly, there should be documented evidence of how the condition has negatively impacted the claimantâs ability to remain productive at work and how the disease has impacted other organ systems of the body which makes it even worse for the claimant to work. If the claimant has the above mentioned documented proof then the chances of the claimant getting disability benefits due to Sickle Cell Disease becomes that much brighter.
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Getting Help With Your Sickle Cell Anemia Ssd Application
Since sickle cell anemia can qualify for SSD benefits in several ways, you must work cooperatively with your doctor to ensure your documentation satisfies one procedural review requirements for eligibility. Doing so will help decrease your wait for a determination on eligibility and could increase your chances of receiving SSD benefits as well.
Additionally, as receiving a quick and favorable decision on your eligibility is your goal, youll want to consider the benefits of working with a Social Security advocate or disability attorney to complete your initial application and collect the appropriate documentation for supporting your claim.
How Edgar Snyder & Associates Can Help
At our law firm, we understand the Social Security system and your odds of being approved for SSD benefits. That’s why we’ve helped thousands of people who are disabled get the SSD benefits they need.
Our track record speaks for itself. We win the majority of claims we appeal for our clients. But more than that, we go above and beyond in our client care. When you hire our law firm, you can trust you’ll be treated with respect. We answer your SSD questions quickly, without the legal jargon. We update you on the progress of your appeal and guide you through the claims process.
If we don’t win your appeal, you won’t owe us a penny. It’s just one more way we take care of our clients.
The Sickle Cell Support Group
Finding out as much as possible about sickle cell disease may help you feel more in control of your illness.
The Sickle Cell Society is a UK charity for people with sickle cell disease.
Their website has a wide range of useful information, including news about research into the disorder.
Page last reviewed: 16 April 2019 Next review due: 16 April 2022
Causes Of Sickle Cell Disease
Sickle cell disease is caused by a gene that affects how red blood cells develop.
If both parents have the gene, there’s a 1 in 4 chance of each child they have being born with sickle cell disease.
The child’s parents often will not have sickle cell disease themselves and they’re only;carriers of the sickle cell trait.
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Sickle Cell Disease: Disability Benefits
Sickle Cell Disease is a group of blood disorders that causes red blood cells to become sickle-shaped, misshapen and break down. The oxygen-carrying capacity of such misshapen RBCs reduce significantly. It is a genetically transferred disease. Red Blood Cells contain a protein called hemoglobin. This is the protein that binds oxygen and carry it to all the parts of the body.
A gene on chromosome 11 is responsible for producing hemoglobin protein. This gene sometimes becomes abnormal due to mutation. If a person inherits two abnormal copies of this gene, one from each parent, then that person will develop sickle cell disease.
The sickle cell gene is passed from generation to generation in a pattern of inheritance called autosomal recessive inheritance. This means that both the mother and the father must pass on the defective form of the gene for a child to be affected.
These symptoms can become so aggravated that the affected person may not be able to lead a normal working life. In India, sickle cell disease is considered as a disability under RPWD Act 2016.
In USA also, a person affected with sickle cell disease may be eligible for getting disability benefits.
What Does The Rpwd Act 2016 Have For Persons With Blood Disorders
The RPWD Act 2016 has recognised persons with blood disorders as persons with disabilities under the Act. Those with 40% and above disability will be given a Disability Certificate.
The first and foremost benefit of The RPWD Act 2016 is non-discrimination. In the past many outstanding persons with blood disorders have been denied employment even though they were selected on merits. With this Act in place, such discrimination cannot happen. Moreover, the Act states denying reasonable accommodation ;will be also discrimination. Therefore, an organization should not deny any accommodation that a person may need.
The second most important benefit would be Reservation in Higher Education. This will enable the persons with blood disorders to pursue higher education of their interest.
The other benefits of the RPWD Act, 2016 are the right to equality, life with dignity, and respect for his/her own integrity equally with others.
Few more measures like appropriate healthcare measures, insurance schemes, rehabilitation programs and incentives to employer in private sector that provide 5% reservation for persons with benchmark disability to be undertaken by the Government will depend on how these are implemented.
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Does Sickle Cell Trait Make You Sick
People who have sickle cell trait also make sickle hemoglobin, but not as much as people with sickle cell disease. They dont have enough sickle hemoglobin for the cells to become sickleshaped easily.
Sickle cell trait is NOT a disease and will never turn into a disease. People with sickle cell trait usually do not have any health problems. However, under extreme conditions a person with sickle cell trait can experience some of the same problems as a person who has sickle cell disease. These extreme conditions include:
- High altitudes
- Deep-sea or scuba diving
- Low oxygen
For more information about sickle cell trait, contact the Sickle Cell Newborn Screening Coordinator at Nationwide Children’s Hospital at 722-5948. The Sickle Cell nurse is also available to answer questions between 8:00 a.m. to 4:30 p.m., Monday through Friday at 722-8914.
HH-I-218 12/02, Revised 11/12 Copyright 2002-2012, Nationwide Children’s Hospital