World Sickle Cell Awareness Day - June 19

  

Bringing sickle cell disease awareness and support to the world.    

  Writer's are telling their story   

Children are living longer

Supporter's  are walking

    Advocate's are educating

   Parent's are helping globally
 
Athlete's are speaking up  

  

Warrior's are really fighting 

The United Nations considered “recognition of sickle-cell anaemia as a public health problem” and in 2008 passed a Resolution urging Member States and United Nations organizations to "raise awareness of sickle-cell anaemia."

At the time, they called sickle cell "...among the world’s foremost, and at times most lethal, genetic diseases -- at national and international levels." 

So, by Resolution, they distinguished 19 June of each year as World Sickle Cell Awareness Day to encourage relevant parties to strengthen health systems and primary health-care delivery.

Fast-forward to 2013, and there's a global effort to bring sickle cell awareness, better treatment, better care, stigma removed and a cure to all people who suffer with this disease.

Offer your comments on Facebook World Sickle Cell Awareness page.

What are you doing?

World Sickle Cell Awareness

Guest Blog - Sickle Cell Disease and Social Security Disability

 

From P. Allen Jones: I know the inability to work because of sickle cell disease is nothing to take lightly. One thing we often experience is excessive absences, inability to perform duties and termination due to sickness. In the US, the Social Security Administration (SSA) will give disability benefits to qualified individuals. The problem for many people, it's difficult to navigate this Agency and their requirements. Thanks to Ram Meyyappan, the following guest-blog post hopes to offer helpful information. 

Applying for Social Security Disability with Sickle Cell Disease

Article by Ram Meyyappan
Social Security Disability Help

The Social Security Administration (SSA) counts Sickle Cell Anemia among the potentially disabling conditions that can qualify a person to receive Social Security Disability (SSD) benefits. If you suffer from Sickle Cell disease and are now unable to work as you once were, you may be able to receive disability benefits through either, or both, of the SSA’s disability programs.

SSD Programs

The SSA has two disability programs:

• Social Security Disability Insurance (SSDI), which is a program for disabled workers who have built up work credits over the course of their employment and who earn below the threshold for what the SSA considers “substantial” income per month due to a severe and medically provable disability.

 

• Supplemental Security Income (SSI), which is a need-based program designed to pay disability benefits to those who either do not meet the criteria for receiving SSDI, or who have such limited income and resources that they need additional monthly financial support.

You can learn more about SSDI and SSI here: www.ssa.gov/pgm/disability.htm

Medical Requirements for Receiving SSD

In addition to meeting the basic technical eligibility criterion for receiving SSD benefits under either of the SSA’s disability programs, you must also show that your Sickle Cell disease is severely debilitating.  There are basic medical eligibility requirements as well as condition-specific medical records and evidence necessary for SSD approval.
The requirements for every disability that qualifies for benefits include having a condition that:

• Prevents you from earning a “gainful living”,

AND

• Has been present, or is expected to last, at least 12 months, or which is terminal.

The condition-specific requirements for being approved for SSD with Sickle Cell disease can be found in Section 7.05 of the SSA’s Blue Book, the manual of medical conditions used by disability determinations examiners.

SSA/Bluebook

This listing requires you experience the at least one following and have substantial medical evidence to back up your symptom claims:

• Three or more episodes of thrombotic (painful) crises in the five months prior to the review of your disability claim,
• Three or more extended hospital stays in the year prior to the review of your disability claim,
• Severe and chronic anemia with a hematocrit of 26 percent or lower

Sickle Cell Complications and SSD Benefits

If you experience severe medical complications, affecting other body systems, then you can potentially be approved for disability benefits under the Blue Book listings for other conditions, even if your Sickle Cell disease doesn’t meet the listing in Section 7.05. Here are a few of the other areas of the Blue Book under which your claim for disability benefits could be evaluated by the SSA:

• Congestive Heart Failure – Section 4.02
• Kidney Failure –Section 6.00
• Stroke – Section 11.04
• Impaired Vision –Sections 2.02, 2.03, and 2.04
• Musculoskeletal System – Section 1.0

Concurrent Conditions and SSD

It is also important to note that the SSA does take all of your medical conditions into account when determining if you meet the eligibility requirements for disability benefits. In other words, your application for benefits should include medical records that detail all of the affects of your Sickle Cell Disease in order to support your claim for benefits. This includes the primary and secondary effects (complications) of your Sickle Cell disorder.

Getting Started with Your Disability Application

Beginning your application as soon as possible is important, as the review process can take a number of months. You can begin your application online immediately, at the SSA’s website www.ssa.gov/pgm/disability.htm or you can schedule an appointment to complete your application in person at your local SSA office.

Work with your doctor to complete the necessary medical evaluation. You will need to provide extensive information on your medical condition, how it affects your ability to work and your (limited) daily activities in your personal life, as well as details regarding your work history, earnings, and your education and training. You will also need to submit details regarding your income and other financial resources.

For more information on sickle cell disease and SSD, please visit:

 www.disability-benefits-help.org  NOTE: This is not a government help website.

Neither this site www.disability-benefits-help.org nor any lawyer or advocate associated with it is affiliated in any way with or endorsed by the Social Security Administration. By requesting a free evaluation, the user will be provided with the name of an independent lawyer or advocate who will contact the user to do the evaluation. Social Security Disability Help is not a lawyer or law firm. It is an advertising service paid for by the lawyers and advocates whose names are provided in response to user requests and it is not an attorney referral service.

 

Sickle Cell Pain And Opioids

There is no way around pain. It will not be ignored and it must be addressed. The issue doctor's deal with is how to treat it. One way is through the use of Opioids.

Sickle cell pain is chronic and life-long. Unless you have the coveted bone marrow transplant, with 100% marrow match and you've been confirmed "cured," you're gonna have episodes of pain. People with sickle cell disease are prescribed many drugs to help us deal with pain, and we have to be careful not to over take our medication....to cure our suffering.

In my previous post, I talk about misconceptions people with sickle cell deal with. One misconception is we're seeking drugs...for fun. This is a huge problem for most people in pain. In addition to misconceptions, there are issues like addiction, depression, damage to organs, and death.

We need Opioids for the relief of pain, however, they are not to be taken lightly. When taking medicine for chronic pain, we (the user) must be informed. Specially related to Opioids, we should know what are they, what they're doing to our bodies, and the risks associated (including abuse and overdose).

To learn more check out this video "Opioids: Friend or Foe" by Canadian Institute for the Relief of Pain and Disability (CIRPD).  It was intended for healthcare providers, but I also think patients (Opioid users) could benefit from this information. Also, CIRPD's article "Opioids and Chronic Pain."

Take the time and learn about Opioids. These medications are intended to help us, but they can also hurt us if we (the user) do not understand their usefulness and our responsibility. 

Check out CIRPD videos or visit their website www.cirpd.org
Also, news related to sickle cell disease and opioid effects go to Medical News Today

Fighting ER Misconceptions About Sickle Cell

Based on an article by Beryl Lieff Benderly

An all too familiar emergency room experience for people with sickle cell disease is humiliating, scary and painful.

Just imagine you are wheeled into the emergency room, every limb on your body feels like large butcher knives are stabbing into your bones. You barely speak except to nod to acknowledge your name and medical record number. A nurse fills out every form, then sends you over to a corner to not disturb others with your cries. You feel like you are dying. Your body hurts, your mind wants to give up and your soul is ready to get out of this pain filled life. This is how it is for many people with sickle cell disease during an emergency room visit.

Last year, Paula Tanabe, an associate professor at the Duke University School of Nursing was commissioned by The National Heart Lung, Blood Institute (NHLBI) to explore this problem.

This issue is complex.

People with sickle cell experience acute and unpredictable pain, severe enough to require large doses of narcotics, is a well-documented feature of sickle cell disease. But Tanabe has found that too often patients in sickle cell agony are not handled properly by doctors and nurses in the emergency department because they erroneously think the patients may be running scams, seeking drugs.

She believes stereotyping is the number one barrier behind that wait: "After being cute little kids with sickle cell that everybody felt bad for when they had pain, now they become this African American 20-year-old asking for high doses of opioid narcotics." 

Ms. Tanabe says better training of health providers and changes in emergency room procedures can improve the care that sickle cell patients receive.

There is hope and help is coming.

Currently, a team has been assembled to update the NHLBI Guideline of Treatment of Sickle Cell Disease. The guideline will be principally aimed at primary care practitioners and their patients to help manage the ongoing processes of the disease. The guideline will also be valuable to hematology specialists and their patients.

There will also be a webinar to discuss these updated guidelines in September 2013 through The Sickle Cell Information Center website.

Personally, I have experienced bad emergency room treatment as well. And, I'd like to thank NHLBI and Ms. Tanabe for their efforts to identify and address this issue.  I appreciate your help in this area.

Source: Kaiser Health News