A popular book by Dr. Seuss that is often given to graduates is Oh the Places You’ll Go.
Now, suppose Dr. Seuss had entered the rare disease world. Perhaps he might say something like this:
Today is your day to breathe very deep.
This is not a nightmare. You are not asleep.
Oh, the places you’ll go, now that you’re aware
There’s travel involved when conditions are rare.
To a specialist doctor who is far away,
But might have some answers, you’ll travel one day.
The process of intake will tax your poor brain,
As you try to give details again and again.
Oh, the terms you will learn, as you go to and fro
From office to office of doctors who know.
And the things that you’ll see when you go to PT,
Like braces and crutches and more in OT.
You’ll see rods and wires and wheelchairs, too
And strange looking things that must be new.
Oh, the things that can happen, and frequently do
When you mix up the terms that are so new to you.
But those medical terms that were so hard to say
When you started out here, will be easy someday.
Oh, the way that you’ll feel once you find the others
Who share your condition like sisters and brothers
You’ll be part of a group with whom you can share
You’ll know that, though rare, you needn’t despair.
You will get together with similar folk
Who’ll help you raise funds to give you some hope
While you’re looking for answers here and there,
Hospitals, medical centers and just everywhere.
Yes, acceptance is hard as you learn how to deal
And reach out to others who know how you feel
There are times you will cry and wish it weren’t so,
But you’ll learn to be strong in those places you’ll go.
About the Author: Denise Crompton and her husband Bob, raised four children, the oldest of whom, Kelley, had the rare disease of Mucolipidosis 3. The many years that they spent caring for Kelley prompted Denise to write two books. Kelley’s Journey: Facing a Rare Disease with Courage chronicles their own daughter’s experiences. Diagnosis: Rare Disease includes some of the experiences of 12 more families, and was written to help raise awareness of all that is involved in living with rare conditions. All of Denise’s royalties go toward rare disease research. The Cromptons live in New Hampshire, where they spend their retirement years enjoying their many grandchildren, while still reaching out to help families with rare diseases.
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