World RARE Disease Day

Today- the last day of February- is World RARE Disease Day. The definition straight from the Global Genes website describes it as:

World RARE Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families.

Why does World RARE Disease Day matter to me? Because I am the Momma to a baby with a rare disease! I’ve shared our Journey with Craniosynostosis many many times. But, I’ll keep sharing it to bring awareness for it, and other rare conditions just like it.

About 1 in every 2000 babies are born with craniosynostosis. That’s a pretty high percentage- and we had never even heard about it before our diagnosis! It has only really been treated for the last 30 years or so. So, as a Cranio Mommy I always see it as part of my responisibility to shine some light on the diagnosis that rocked our family, so that other families may find comfort in our story.

We’re having our 5th Cranioversary (anniversary of my son’s surgery) this June, and I can’t believe the amazing changes we’ve seen. And the advancements they’ve already made in treating cranio and other cranial related problems. It’s amazing the stories I’ve seen shared and the support systems that have been created to aide parents and family members of those with rare diseases.

If you have a rare condition- shout it out! Today, along with every day, is a great day to be heard! Just by sharing your story you can help someone else going through the exact same thing.

And today you can easily support Global Genes and World Rare Disease Day by wearing Jeans to promote awareness. Change your profile photos to support the #CareAboutRARE movement, and share how important rare disease awareness is to you.

There are rare diseases all around us. Some are hidden, you may not even know who is carrying the burden of a rare disease. But, let’s support all of them. With all of the ugliness in the world, it’s the little things that can really make a difference in peoples’ lives. Go ahead and hug your loved ones with rare diseases today, and show them you support them!

 

9 Comments

  1. Becky

    February 28, 2017 at 9:25 am

    Trisomy 4q26 that is what Kalel has, causes developmental delays, seizures and other things. Gross and fine motor skills effected, about 2 years behind other children. SPeech effected. Doctors said he would be severely mentally challenged but we don’t see that. He is learning and doing very well now. Seizures under control with medications. We take one day at a time.

  2. chanel

    March 1, 2017 at 8:43 am

    what a special little boy he is! thank you so much for sharing this! he is lucky to have you as his mama!

    1. mrsbishop

      March 1, 2017 at 10:45 pm

      Thank you sweet Momma! <3

  3. Jaclyn Q

    March 1, 2017 at 11:13 am

    There are so many rare diseases that just don’t get the recognition they deserve. Thank you for continuing to educate!

    1. mrsbishop

      March 1, 2017 at 10:46 pm

      SO true- we had never even heard of cranio before our diagnosis. Some of the doctors had never even heard of it!

  4. This Messy Season

    March 1, 2017 at 9:44 pm

    I love hearing the stories of your family’s recovery, strength, and knowing S now. He is so perfect and smart and we love him so much!

    1. mrsbishop

      March 1, 2017 at 10:45 pm

      Awww- he has come a long way!

  5. Eryka

    March 3, 2017 at 4:07 am

    Thank you for sharing this! It’s so important to push awareness out into the world.

  6. Jenna

    March 6, 2017 at 7:58 pm

    This is so important! Thank you for sharing!

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