Ministry in Rare Disease by Heather Earley

Heather Earley with her precious children

“Hope is an olive leaf—evidence of dry land after a flood… ” ~ Max Lucado

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort who consoles us in all our affliction , so that we may be able to console those who are in any affliction with which we are ourselves are consoled by God.  ~ 2 Corinthians 1:3-4

When we are faced with a diagnosis of rare disease, the news can be devastating.  We become fearful of the future and how we will manage a world that we have no preconceived understanding or involvement in.  Rare disease is typically a world of the unknown, where many suffer from lack of treatment options, lack of physician knowledge, and limited availability and/or access to information due to the rarity of the disease.  We are left struggling for answers. We may ask ourselves, how the good Lord would put upon us such a demanding and scary path for which there seems to be no hope or guidance, and more importantly a path that leads to comfort and finality to the circumstance.

When we are sick with a cold, we treat ourselves with cough medicine, warm liquids, rest, and blankets to keep us warm.  In time, our cold disappears and our health is restored.  When we break a bone, we have x-rays, pain relievers, casts and sometimes surgery to “fix” the break.  In time, our bones mend, the pain subsides, and we carry-on with our usual tasks.  When we are diagnosed with a chronic ailment, such as diabetes, we may struggle with continuous, painful shots, medication, management of proper food intake, and continuous healthy exercise.  In time, we adjust to the strict demands of the illness and adapt to the life we have been given.  When we are diagnosed with rare disease, our world becomes complex.  There may or may not be medicines available.  There may or may not be an end to continuous tests and x-rays.  There may or may not be available research and/or literature for which to understand how the rare disease affects our body.  There may or may not be standard protocols to follow.   And in many cases, our wounds or symptoms may or may not heal.  Fears ensue. Financial burdens escalate. Our hope for the future is questioned.  We lose hope.  We ask ourselves, How will we cope?  What do we do?  Who can help us?  How will we survive?  Why did the Lord seek us out to follow a path that is so foreign and even frightening?

I am here to tell you today that the blessings we have been given – the blessings of the Lord that have been chosen as part of our life path – is one that should be embraced, loved, accepted, and celebrated.  And through those blessings, we affectively are able to minister to others the teachings of the Lord. The Lord teaches us through life’s trials and tribulations the opportunity to seek God for His grace, love, mercy and beauty and His lessons of humility, kindness, strength, encouragement and love.  He carries the full burdens of our pain and suffering, yet helps us to understand the gifts He places within us as result of our sufferings. The Lord will not place upon you the burdens for which you can not bear.  The olive leaf for the Christian is a verse of Scripture (Max Lucado).  “For everything that was written in the past was written to teach us, so that through endurance and the encouragement of the Scriptures we might have hope.” (Romans 15:4)  Rare disease teaches us to love and accept one another and refrain from making judgements.  Take Neurofibromitosis or Hemophilia.  In many aspects these diseases, if not treated properly can be physically deforming.  When an outsider encounters an individual with these deformities, the natural reaction is to stare in bewilderment.  Some will judge.  Some will be intrigued.  Some will be unkind and make fun.  Some will be sympathetic.

Through our blessings of this disease affliction, we come to understand love.  No matter what we look like, we have an incredible desire to be loved and love one another.  We learn to see past the deformity and learn acceptance.  Through our understanding of diseases such as these, and learning to accept what we have been given, we can then help others to understand the disease and accept what it means to be afflicted with a deformity.

The Lord is teaching us appreciation.  Take Russell-Silver Syndrome or Autism.  We struggle with daily management, fear of how the disease and management of such disease will affect our future.  Although we are relatively normal on some levels and different in others, we know our future does not necessarily end in death if managed properly.  We know that with constant therapies, optional treatments, and guidance – even with the unknown, we will manage and survive.  But, the demands of managing these diseases are great.  Through these trials, we are taught to appreciate the gifts of what is available to treat our disease.  We are taught to appreciate others who are not as fortunate with their disease in that they may not have a similar outcome for their futures.  The Lord brings us closer to Him with these blessings of understanding.  And through these blessings we are able to minister to others of the same circumstance and teach others how to appreciate what the Lord has given us, versus what we may think or believe we are lacking.

The Lord is teaching us to advocate through will power and strength.  Take Niemann Pick Type C.  This fatal rare disease has no known approved FDA treatment or cure.  But, one mother with twins has used her will power and strength to find a treatment through constant researching, advocating and pleas with scientists to allow a non-FDA approved drug to help keep her children alive – and so far has been successful.  If you were to meet this mother, you would see the amazing determination and  strength the Lord has given her to endure such a trial.  Through these blessings, the Lord has allowed others to see her strength and with admiration – fight for their children’s lives, to advocate when there is no one who is on their side, and to continue to gain the confidence we need by watching her successes and all that she and her children have endured.

The Lord is teaching us to hope.

The Lord is teaching us about forgiveness.

The Lord is teaching us about humility.

The Lord is teaching us about miracles, love and faith.

No matter our affliction, we are blessed to endure the trials of our rare diseases because we become closer to the Lord.  Because we are given, by the Lord, the tools necessary to minister to others.  The Lord gives us these blessings and gifts so that we may share our knowledge with others and help them to see the blessings and hope that He provides through our trials.  The Lord makes us wiser, hopeful, loving, empathetic, passionate, and humble. And these amazing gifts are provided by the Lord.  When we minister to others, we are in effect, providing others the teachings of the Lord.

An article/blog I wrote, reflects on those blessings:  Through rare disease ministry, we can help others understand the importance of our Lord’s chosen paths, and how we can help others through our experiences.

RECOMMENDED READ:  A Leaf of Hope By Max Lucado

To view the transcript of Thursday night’s TweetChat on Ministry to those with Rare Disease and also connect to other valuable resources on this topic, visit the following links:

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  1. #1 by rssadvocate on April 23, 2012 - 3:42 pm

  2. #2 by laughingnana on April 23, 2012 - 5:05 pm

    Heather, thanks for sharing the beauty of your words that come from your deep faith and belief in our universal connection.

  3. #3 by hopeforheather on October 17, 2012 - 6:17 pm

    THIS IS AMAZING! Why have I never found this before JUST NOW?!

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