Tag Archives: coaches corner

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Deciding whether you should continue working or go on Social Security Disability is a tough decision. It can add to your stress level and worsen your disease activity. Before you rush into any decisions you should take inventory of how you are feeling physically, emotionally, and spiritually. Your job or career can have a significant impact on these aspects of your health. It’s important to understand how your job is affecting you. If you feel like you need to be on disability you should consider the following:

  • Will you be on long-term or short-term disability?
  • How will it affect your recovery and ability to reach remission?
  • How will it affect your insurance coverage and drug costs?
  • How will affect you financially?

Once you have decided, contact your physician and let them know that you need their assistance in the process. Your physician will need to provide information that confirms that your condition is severe and that you can’t do the work you previously did due to your condition. Apply immediately at www.ssa.gov so you can start the process.

Both you and your physician will receive a health questionnaire about your condition. Make sure that you and your doctor list all impairments that prevent you from working including medication side effects. Be aware that an interview may be held to determine your health condition. Keep copies of all your paperwork, health records, and track your conversations. Get to know your case worker as they will have influence in the decision process.

In many cases Social Security Disability claims can be denied the first time. Don’t let this discourage you! You can always file an appeal with additional medical information that can substantiate your claim. The IPPF can also help provide information about the disease that may help educate individuals regarding the severity of the disease.

Bullous Skin Disorders are included under listed impairments and in many cases Quick Disability Determinations (QDD) can be made depending on the severity of your disease. Receiving benefits, like your disease, take time so the sooner you apply the better! Although the process may seem daunting, your health may depend on advocating for yourself.

Don’t be afraid to contact the IPPF if you have a question or just “Ask a Coach”! Remember, when you need us, we’re in your corner!

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As a Peer Health Coach with the IPPF, I am often reminded how fortunate that I am to be able to speak with so many individuals who lives have been affected in so many different ways from Pemphigus and Pemphigoid. I am able to take these collective experiences and pass them on to others in the form of recommendations, suggestions and advice. Even more amazing is the fact that the IPPF has four Peer Health Coaches doing this simultaneously!

This year your coaches have collectively worked with over 200 people answering questions, looking for physicians, helping with problems, providing educational information and providing peer support. Your coaches often discover fantastic “pearls” of information and have become great resources for all of us managing our conditions.  To help pass along some of this great information we have created “Coaches Corner”, where your coaches can share knowledge about Pemphigus and Pemphigoid to help you improve.

Recently, I had some one ask me about being a blood donor which was something that I had done regularly prior to being diagnosed and had often wondered if I would be able to do it again. I found that according to the American Red Cross, you are not eligible to donate blood if you have some types of generalized autoimmune disease including systemic lupus erythematosus and multiple sclerosis (Since Pemphigus is so rare it is not mentioned). They also provide the following guidelines:

  • “To give blood for transfusion to another person, you must be healthy,
  • be at least 17 years old,
  • weigh at least 110 pounds,
  • and not have donated blood in the last 56 days.”

“Healthy” means that you feel well and can perform normal activities. If you have a chronic condition such as diabetes or high blood pressure, “healthy” also means that you are being treated and the condition is under control. Other aspects of each potential donor’s health history are discussed as part of the donation process before any blood is collected. Each donor receives a brief examination during which temperature, pulse, blood pressure and blood count (hemoglobin or hematocrit) are measured.”

So based on those guidelines, I would not recommend giving a blood donation unless it were for your own use. I would, however, check with the local blood collection agency you are considering just to make sure.

Although I was slightly disappointed with what I found because I was hoping that I would be able to give blood, the knowledge that I gained by doing a little research was helpful. I also found some satisfaction in knowing that I can donate blood to help with Pemphigus and Pemphigoid research. Perhaps that is the best way to donate blood as someday it may lead to a cure!

Thanks for all your support,

Marc Yale
IPPF Certified Peer Health Coach