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The Miracle of True Love
Powerful Patient, 2010 Week 25
Host: Joyce Graff, http://powerfulpatient.org, editor@vhl.org 800-767-4845
Aimée Salas
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Aimée Salas from the island of Curacao in the Dutch Carinnean has written a book about her life-changing experience when diagnosed with von Hippel-Lindau disease. On an island with a total population of 150,000 she found herself with a diagnosis of a rare disease, needing a surgery that was not possible on her island. But with faith and the help of family and friends she found the medical help she needed, survived the surgery, and maintains her faith and her optimism.
About Aimée Salas
Aimée is a secretary in a large international insurance firm with offices in Curaçao. Stricken with pain and weakness in her arms and legs, she was told there was no hope. But with the help of family, friends, co-workers, and her faith in God, she found her way to an excellent surgeon who removed the tumors from her spine. That was only the beginning of a long journey of rehabilitation. She has written her story in a book, The Miracle of True Love, published in Curaçao.
Curaçao is one of the islands in the Netherlands Antilles, in the southern Caribbean Sea off the northwest coast of Venezuela. It was discovered in 1499 and settled by the Spanish in 1527. The Dutch gained control in 1634, although the British held the island during the Napoleonic Wars (1807-1815). Oil refining and tourism are the major industries.
Aimée’s Miracle
Miracles come in all manner of packages. For Aimée, her miracle began in finding doctors who would listen, finding a colleague who knew about M.D. Anderson in the U.S., finding a way to fund a trip to Texas to be examined by the surgeon there to determine whether there was a reasonable chance of success. She went into the surgery knowing that there was a significant change that she would not survive the surgery, and even if she survived that she might be paralyzed from the neck down.
She not only survived, she was able to move her arms and legs a little bit. With persistence and determination and lots of support from the people around her, she was able to build on those tiny movements and come back to full capacity, but it has taken years.
Following the surgery she was diagnosed with von Hippel-Lindau disease, a tiny genetic misspelling in one gene among the millions of genes that make up our bodies. This tiny flaw increases one’s chances of having tumors of the eye, brain, spinal cord, kidney, pancreas, and adrenal glands. In Amy’s case, there are also some small tumors on her lungs. Through the collaboration of patients and physicians all over the world, we have learned how to watch out for problems, find them when they are small, and in most cases treat them successfully. Because Aimée’s first spinal tumor was diagnosed only after it was significantly advanced, it was very difficult to remove and much more risky than one would hope.
There is no drug to cure VHL – yet. We are working toward that day. But in the meanwhile, there are some things that people can do to reduce their risks, which apply to so many other conditions as well:
- Good nutrition
- Plenty of sleep
- Stress management
For Aimée, a key element in managing her stress and sustaining hope is her faith. Research has shown that any stress management program is more powerful when it includes an element of faith – whatever your faith may be, turning over the burden of things that we cannot control to the Higher Power in our lives can make a very significant difference in the course of our disease, and in the health of our relationships with others in the world.
Aimée has created a foundation in Curaçao which provides small bits of comfort for cancer patients. She continues to visit and counsel people who are struggling with illness, and to talk about her experiences and her faith with anyone.
Please see her website at http://www.truelovemiracles.com
And please support the VHL Family Alliance in helping people like Aimée throughout the world to understand what VHL is, what it may do in the body, how to watch out for problems, and how to maintain their health. Our goal, as Aimée’s, is that everyone have a Very Happy Life, no matter what happens to them in this life.
We all have a choice each day when we wake up. We can focus on the negative and be aware of every ache, pain, and disappointment; or we can choose to have a happy day, full of smiles, be a blessing to ourself and others, and simply not focus on the bad stuff. We don’t ignore the problems, we take steps to do our part in resolving them, but we don’t let them become the focus of our lives. Aimée’s ministry to others helps her keep her own problems in perspective.
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