Hope is essential for the rare disease community

As we step into what I consider to be The most wonderful time of the year, I reflect on why this season of giving is so magical. Does it really have something to do with gifts under the tree, parties or Christmas lights?

Many of us fill our December days with a whirlwind of activities as we prepare for the holidays. We can spend countless hours shopping for the perfect gifts, giving generously to our neighbors and friends, and baking, eating and decorating more than ever.

For my family, the season is full of great celebrations and embellished with abundant hope. This is what draws us into the celebration of Christmas.

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Evangelist Billy Graham said, “Perhaps the great psychological, spiritual, and medical need that everyone has is the need for hope.

Over the past two years I have realized how much we rely on hope. Hope for a better future for our children. Hope for a flicker of light at the end of the COVID-19 tunnel. Hope for unity within our communities, our country and our world.

For those of us affected by a rare disease, hope is often the fuel we need to face another day. We may have to look a little harder for this, but we tend to appreciate it more than most. As the parent of a girl with Lambert-Eaton myasthenic syndrome, I hold on to hope every day.

To hope means to desire in the expectation of obtaining. Members of the rare disease community want a cure, new treatments and restored health, hoping to get them someday. When we realize that a drug isn’t working for us or our loved one, our hope may fade as we face the depths of discouragement. Then we wait with the expectation that another treatment will come.

Hope is not a luxury. It is a necessity. We need hope like our lungs need air.

As we radiate each day of the December calendar, may we all embrace the hope that this time of year offers.

In a world filled with darkness, disease and tragedy, hope can light up our lives and give us a reason to celebrate. Let’s embrace it as we anticipate everything to come during this wonderful time of year.


To note: Lambert-Eaton News is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard or seek professional medical advice because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and aim to spark discussion about issues related to Lambert-Eaton myasthenia gravis.

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