Six Steps To Becoming A Better Friend

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We all learned how to be a friend early on but for those of us who know someone fighting a rare disease or chronic illness, it takes some understanding along with a little effort to become a better friend. The challenges faced by the chronically ill are a daily part of life. You may know what you need but the same can’t always be said of your friends or acquaintances. Ask Questions Engaging in a conversation with someone who has a rare disease or chronic condition requires particular skills. It helps if, in the beginning, you allow them to control the flow of conversation. Take a moment to think about your questions. How are you? It’s often the first thing people throw out in a passing conversation. It’s an easy question, but subconsciously it sends the message: I know you’re ill, but I don’t want to hear all the gory details. The

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The Common Thread Searching For The Unexplained

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Superficial siderosis is ultra-rare. In fact, if you searched the national or international rare disease databases until the last few years it wasn’t listed.  We should be glad so few will face a diagnosis of superficial siderosis, but you can’t help but wonder. Is there a common thread to be found? I often find myself thinking about this vey topic. Dr. Levy has said they don’t know why some people are overwhelmed by the blood infiltration. An unlucky spin of the wheel? I’m not medically educated but what if I brainstorm and toss around a few ideas? First, let’s talk about what we do know. Superficial Siderosis is not hereditary; you aren’t born with it. Superficial Siderosis is not contagious; you can’t spread it or catch it.  Age or gender do not play a significant role in the diagnosis; patients were diagnosed at an older age due to the slow nature of

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Life Expectancy of Superficial Siderosis Patients

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It’s human nature to wonder How long will I live? When you’ve been diagnosed with a life-changing ultra-rare illness like superficial siderosis thoughts like this can consume you. Superficial Siderosis Life Expectancy, four words make it intensely personal. The early impressions I found online were dark; there is no cure, the damage is irreversible and fatal. The word fatal is a definite attention grabber. The day we found out about superficial siderosis I read that one single sentence in a very early report and my heart dropped. Three Five years into this journey and we have first-hand insight with a much clearer understanding of the nature of this disease. If you review the possible combination of symptoms that may assault you, it should become clear while you may suffer body and soul, none are life-threatening in an immediate sense. There is no doubt the toll on your body is punishing. The

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Punching Through the Brain Fog


Brain Fog and Stress Brain Fog  Stress  Anxiety  Depression We’ve both been fighting a definite lack of focus.The last few months have not only been busy but very stressful for us. We headed into the summer months not giving much thought to the immediate future. Health wise things were leveling out so we felt we could focus on refining the details of our life. A three-week bout with pneumonia and bronchitis proved just how tough dealing with illness could be with a compromised immune system. A beloved sister faced the re-occurrence of her cancer. Her battle was short and as about as unfair as life could make it. We are still mourning her passing. Our health insurance notified us they are discontinuing all PPO networks for individually purchased policies in Texas. Forced into an HMO network. Seven specialists and one PCP physician. Will we have to find all new doctors?  New doctors

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