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Caring for the Zebras: Loving and Helping People With Rare Diseases

Most of us know that February is Heart Month, and that October is Breast Cancer Awareness Month, but few of us are aware that March is World Rare Disease Month.  Currently, there are 7,000 different types of rare diseases, and disorders, and more are being discovered with each passing day.   In the US 10% have a rare disease.  Many of these are people you know, people who pass you by each day, and many of them struggle in so countless ways.  With that said, I want to share a list of things  to say when someone tells you that they have been affected by a rare disease, and I also want to give you some ways to help individuals or families with rare diseases.

What to Say and What Not Say When Someone Tells You

What to Say

  1. I’m so sorry for what you’re going through.
  2.  That must be rough.
  3.  That sounds hard.
  4. Thanks for sharing with me.  I know that must have been hard for you to share that.
  5. What can I do for you?These are just ideas, but what I’m really trying saying is – be sympathetic. Let your words show that care.  Sometimes all someone needs is a positive word of encouragement.

What NOT to Say

  1. But you don’t look sick!
  2. I know someone that had _________- and they
  3. Oh you poor thing
  4.  Bless your heart
  • #3 or #4:  These may be okay to say depending on the person/family and his/her/their reaction as they tell you about their illness, but it would be better to remind the person how strong he/she is.  It takes enormous strength to live with any disease, disorder, or syndrome, and it would be best if you remind him/her/them of their strength.

How to Help Individuals or Families With Rare Diseases

Individuals

  1.  Offer to go to an Appointment- as moral support
  2. Offer to take the individual to his/her medical appointment
  3. Offer to run errands for individual if he/she is unable to
  4. Offer to do household work if he/she in unable to
  5. Cook or Bake for the individual if he she is unable to.

Families

  1. Offer to go to an Appointment- as moral support
  2. -it would be especially helpful that you do this if the parent is divorced, unmarried, widowed,
  3. Offer to take the individual to his/her medical appointment
  4. Offer to run errands for individual if he/she is unable to
  5. Offer to do household work if he/she in unable to
  6. Cook or Bake for the individual if he she is unable to.
  7. Offer to Babysit When Husband and Wife need or want to go out.

These rare diseases are by chronic by nature, and unlike other diseases cannot always be cured.  95% of rare diseases do not have an FDA drug approved treatment so your ongoing support is vital.  In all of this I hope to raise awareness, and give you tools to help the many people who have been touched by a rare disease.