Rare Indeed

“Anyone with such a defiling disease must wear torn clothes, let their hair be unkempt,cover the lower part of their face and cry out, ‘Unclean! Unclean!’  As long as they have the disease they remain unclean. They must live alone; they must live outside the camp.” ~ Leviticus 13:45-46, NIV

While God’s laws in Leviticus were intended to reflect in a physical way the spiritual disparity we humans have as well as keep His chosen people safe from ancient plagues, the sick and disabled were broadly ostracized as “unclean” in those days.  There were no social welfare programs back in that day.  And those who were blind or crippled could not provide for themselves or their loved ones in the traditional sense.  Begging for help or gleaning the leftovers of the harvest were their only hope for survival in those times.

It often breaks my heart considering the alienation of these people.   If my son had been born back in that day, he would more than likely be considered one of the “unclean” with his rare bleeding disorder.  Many with rare diseases would fall in this class of Jewish citizenry back in biblical times.  Their unusual diagnoses would render them outcasts leaving their peers wondering what sin brought this upon themselves. (See John 9:2)

I thank God that my son and the millions of his fellow citizens who struggle with a similar plight were born in this era.  There are safety nets for these individuals.  Even so, the people of God have changed remarkably little in the thousands of years that have passed since Jesus walked the earth.  People tend to shy away from difficult things that they are unable to understand.  And much unspoken judgment still comes upon these families.

Nevertheless, this is once again an area where the church is perfectly poised to share hope with this population.  Some of the unique needs that these families face include:

  • The exorbitant cost of the “specialty pharmacy” or “orphan drugs” that these patients must use causes them to bear an enormous financial angst that most individuals will never face.
  • The intensive treatments or therapies these individuals must receive are key to their survival.  As a result, they spend a disproportionate amount of time within the medical care system, at many appointments, struggling for some sense of routine family life.
  • Due to the rarity of the diagnoses, medical options are often limited.  These patients are not necessarily able to receive their medical care from the local doctor, but must travel further to specialty hospitals or clinics with a limited number of practitioners in their given area of concerns.
  • There are estimated to be close to 7,000 rare disorders that have currently been identified.  A treatment may not even be available for certain diagnoses.  Some of these diseases may be terribly deforming or life-threatening.  Others may “invisible disorders” that are more chronic in nature, still deeply affecting the quality of life.

The rare compassion that the church can be especially effective in ministering to these families by:

  1. Offering benevolent funds and charitable aid to those who have encountered a particularly difficult financial season or crisis.
  2. Inviting volunteers to spend time with the caregiver when hospital stays or clinic visits are long or frequent.
  3. Free childcare would especially be a blessing to these families when it comes to watching a typical sibling, son or daughter.
  4. The gift of meals, gas cards or restaurant certificates are particularly helpful to these families.
  5. Spiritual mentoring or growth is more important than ever for these families.  The belief that hope needs to come from the Lord alone and not from any treatment or cure available must be developed for these families to reach the potential Jesus intends for them.
  6. Including these families despite the fact that they must often jump in and out of programs is key.  Isolation is tremendous, especially when the medical demands take such a disproportionate time in a family’s life.  Giving these individuals the grace to participate if and when they can, is a blessed gift to them.

While certain disorders may be rare, the total number of Americans estimated to be affected by these rare disorders is 30 million.  It ought to cause us to wonder how many of them we are reaching.  In order to bring this issue to the fore, we will be featuring special needs mother and rare disease advocate, Heather Earley on our Thursday, April 19, 2012 #SpnMin Chat.

If you have never participated in a TweetChat before, merely follow these instructions:

First, you must have an established Twitter account.  If you don’t already have one, simply go to http://www.twitter.com and set a free account. When participating in the chat for the first time, click on the following link:  http://tweetchat.com/room/spnmin.
You will be prompted through an easy three-step process.
  1. When you click “Sign In”, you will then be asked to “Authorize an Application” through your Twitter account.  To attend, you will have to click the blue “Authorize App” button.
  2. Once you have done so, merely type in the name of the chat (hashtag) you wish to attend at the top of the page, and click go.  For our chat, type in spnmin.  Now you’re in the chat room!  But you’re not finished yet.
  3. To keep most current with the conversation, go to the upper left hand side of the screen and click on “Refresh Speed”.  Slide the tab down to 5 seconds.  This will keep you up-to-date with the scrolling conversation.  Remember, just like on Twitter, you are limited to only so many spaces for your comments…in this case 132 characters.  You don’t have to add the #spnmin hashtag after every post. TweetChat adds the hashtag automatically.

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  1. #1 by Tammy Peper on April 19, 2012 - 3:32 pm

    We are dealing with a rare disorder but we 21/2pages of diagnosis’ and most ore severe, she sees 15 drs, 4 therapist and has a nurse, we have had 18 hospitals stay in 20 mo, expenses are almost impossible to handle, haven’t been able to go to church in 4 yrs because she just can’t be left with anyone, the stuff she needs at home for therapies arnt covered, we can’t get a lift for they vehicle covered by any program because the suburban is more than 10 yrs old, cant afford a new or a van, so I can sympathize with all you are going through, most people without a special needs child act like they understand but you can tell it is beyond what they can comprehend, unfortunately our state ranks 49th on the Medicaid ratings so not going to get much there, I have found what bothers me them most it that we went to the churches in the area and asked if they new of some people who would volunteer to help with exercising a 3 yr old (it takes 3 people) we got absolutely no response from a single person or church and that included about 15 churches, needless to say I was disappointed

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