Some health issues in life can easily be understood by those around us. Sometimes, others take more learning and processing.
The Recessive Dystrophic form of Epidermolysis Bullosa (EB) is perhaps one of those.
It is a rare skin disease that causes skin to be extremely sensitive, to the point of gaping wounds with even small amounts of movement against the skin. There is no cure for EB currently. But the disease doesn’t stop there. EB patients suffer with maladies everywhere from disfigurement to disability, malnutrition and even premature death.
In the Recessive Dystrophic form of EB the faulty genes are involved in the production of a type of collagen, a strong protein in the fibers that hold the deepest, toughest layer of your skin together. As a result, the fibers are either missing or nonfunctional, according to the Mayo Clinic. It is estimated that only 1.5 people in a million have this form.
Jamie Hartley is an EB patient with the Recessive Dystrophic form who is defying the odds. From Alpine, Utah, USA, Hartley has embraced life despite the setbacks her EB can often place in her way.
From her condition, Hartley’s esophagus has also been affected, causing her to have a softer voice than normal. She has also battled skin cancer and has dealt with those difficulties for the past 13 years.
These challenges have caused her to struggle with maintaining a healthy body.
“Because I have sores and scarring in my mouth, it’s difficult and painful to eat. Eating takes a long time, and malnourishment is common for people with EB for that reason,” Hartley said.
Hartley has gone on to live a fulfilling life with her husband and her work to help people with EB, including starting a non-profit for EB survivors. Her husband spoke about feeling the spiritual prompting to marry and take care of her.
He described the overwhelming feeling he had once he made his promise.
“Jamie was the type of girl I wanted to marry. However, I started to realize it may be a lot of work marrying Jamie because I would have to help take care of her and her needs,” Taylor Hartley said. “After I listed to myself those things I would help her with, I made a promise to the Lord. I promised that I would always be there to take care of her.”
“I felt a very strong and spiritual confirmation,” Taylor Hartley said. “I knew it was the Lord telling me my decision was the right one and he was pleased with me. And it is because of that experience I am able to stay positive through all of the struggles that come our way.”
Hartley and her husband are members of The Church of Jesus Christ of Latter-day Saints, (often mistakenly called the Mormon Church).
The Church of Jesus Christ, (Mormon, Latter-day Saint or LDS) has great doctrine and important teachings about trials in our lives (such as health problems).
Many in the world ask why bad things happen to good people. Members of The Church of Jesus Christ know the purpose of life, and that gives a better perspective on life when trials come.
On Mormon.org under FAQ / Purpose of Life it states:
“Have you ever thought there must be something more to life than just living day to day? There is—much more. Your life has a divine purpose.
God, your Heavenly Father, has prepared a marvelous plan for your happiness. When you realize that God has a plan for you, it is easier to understand why you are on this earth. God wants all of His children to progress and become more like Him. This time on Earth provides opportunities for you to grow and progress. Coming here allows you to:
Receive a physical body.
Exercise agency and learn to choose between good and evil.
Learn and gain experience that will help you become more like your Heavenly Father.
Form family relationships that may become eternal.
By following our Heavenly Father’s plan, you—like all of His children—can someday return to live with Him and with your loved ones. You can have greater peace in this life and eternal joy in the life to come”
Joseph Smith, the first Prophet of God in this dispensation, (the modern time period of the world), received some of the most beautiful and comforting words from God to His people:
7 My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;
8 And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes.
When Joseph Smith received this revelation, he and several companions had been unjustly jailed on December 1, 1838, to April 6, 1839. While there, they were living in a pit in inhumane conditions – suffering cold, poisoning and sickness to name a few. This comforting passage of revelation has brought comfort to all followers of the Savior in The Church of Jesus Christ.
While imprisoned, the Prophet wrote a letter to the Saints that included a prayer on his behalf and theirs (see D&C 121:1–6). One of the most poignant questions of life is “Why do bad things happen to good people?” The Lord’s response to Joseph Smith’s prayer gives perspective on trials and lists good things that come from enduring them.
Though the Prophet Joseph’s experience can help us understand our difficulties, some trials defy reason. Elder Harold B. Lee, who was then a member of the Quorum of the Twelve, said, “It is not the function of religion to answer all the questions about God’s moral government of the universe, but to give one courage, through faith, to go on in the face of questions he never finds the answer to in his present status” (in Conference Report, Oct. 1963, 108).
On Lds.org, under the Gospel Topic of Adversity, there is great information about weathering the storms of life:
Each person’s success and happiness, both now and in the eternities, depend largely on his or her responses to the difficulties of life.
Adversity comes from different sources. Trials may come as a consequence of a person’s own pride and disobedience. These trials can be avoided through righteous living. Other trials are simply a natural part of life and may come at times when people are living righteously. For example, people may experience trials in times of sickness or uncertainty or at the deaths of loved ones. Adversity may sometimes come because of others’ poor choices and hurtful words and actions. Suffering may also come through a loving Heavenly Father as a tutoring experience.
When some people face adversity, they complain and become bitter. They ask questions like “Why does this have to happen to me? Why do I have to suffer this now? What have I done to deserve this?” But these questions have the power to dominate their thoughts. Such questions can overtake their vision, absorb their energy, and deprive them of the experiences the Lord wants them to receive. Rather than responding in this way, people should consider asking questions such as, “What am I to do? What am I to learn from this experience? What am I to change? Whom am I to help? How can I remember my many blessings in times of trial?”
Different kinds of adversity require different responses. For example, people who are stricken with illness may simply need to be patient and faithful. People who suffer because of others’ words or actions should work toward forgiving those who have offended them. Victims of abuse should seek help immediately. If a person’s trials come because of disobedience, he or she should correct the behavior and humbly seek forgiveness.
Although some of the responses to adversity will vary, one response should be constant—trust in Heavenly Father and Jesus Christ. The prophet Alma taught, “Whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day” (Alma 36:3).”
It is people like Jamie Hartley who are a great example in moving forward with strength and trusting in Jesus Christ despite the difficulties in life.
This article was written by Livi Whitaker, a member of The Church of Jesus Christ of Latter-day Saints.
Livi is a member of The Church of Jesus Christ of Latter-day Saints (“Mormon”). She is a Communications Specialist at an Insurance Brokerage firm in Boise, ID. Professional experience include writing – based positions at the United Nations and AARP, Media Services, Inc. She is an avid blogger at thebrightbit.com and sensiblystyled.com, a modest fashion blog. Livi Whitaker is a freelance writer and authors the positive blog for all things lovely, www.thebrightbit.com.
Additional Resource:
Livi Whitaker is a member of The Church of Jesus Christ of Latter-day Saints - a "Mormon" woman in Idaho. She has worked in various professional Communications based positions in New York, Italy and Idaho since her first day at the United Nations on Jan 2nd, 2007. Livi now devotes her full attention to free lance writing. An avid writer since childhood, Livi has kept a journal as long as she can remember - yet some of the most fulfilling writing she has done is for the More Good Foundation, sharing her beliefs online.
