0 In Dwarfism

Our Different Life Living with Dwarfism- Part 1

Hey! I am so glad you are here to join in me conversation!

I want this to feel like we are sitting across from each other in an adorable coffee shop with a cup of coffee getting to know one another because when you get coffee with someone barriers are broken, questions are answered, and understanding happens.  For that sake I’m drinking a cup of black coffee made by my trusty Keurig (best invention ever) as I write this!

I find when we are able to have a conversation about what makes us different we actually find out how little that matters and how much we have in common. Education breaks down ignorance and holds us more accountable for how we treat others. So, this month I challenge you to learn something new about someone you don’t know! We are all a different from each other, no matter if its our height, skin color, or background and there are a lot of misunderstanding happening in the world today.

October is Dwarfism awareness month and over the course of the month I want to share with you a little each week about what makes Andrew and I unique. Today I’m going go over textbook information about Dwarfism, and in coming weeks I will cover how it affects our daily life, proper language to use when talking about people that are different, and people living with Dwarfism who are an inspiration!  So please stick around and if you have any questions feel free to ask them!

 

kate             photo3

The definition of Dwarfism is quite broad. Medically it is defined as a medical or genetic condition that usually results in an adult height of 4’10” or shorter.

There are over 200 different types of dwarfism, Andrew and I were both born with the most common form of dwarfism called Achondroplasia.

Which is a mouthful! It is pronounced,  a·chon·dro·pla·sia or for those who know how to read this, /āˌkändrəˈplāZH(ē)ə/

Achondroplasia is a genetic condition that results in disproportionately short arms and legs. Its physical characteristics are:

  • disproportionately shorter limbs
  • average sized torso
  • smaller hands and feet
  • larger head
  • prominent forehead

Most people ask us if our parents or anyone in our family has achondroplasia and for both of us the answer is, no. We were both born into very loving families of average stature. This is actually quite common, 80% of people with dwarfism have average sized parents and siblings.

kateandrew-420

This is Andrew and I with both of our families at our wedding a month ago!

People often wonder, “If no one in your family has it, how is it a genetic condition?”

They found that it is a rare mutation of the gene FGFR3. For an average sized adults, like our parents, this is very rare it only happens in about 1 in 25,000 births. However, now that Andrew and I have that gene we have much higher chance of passing it along to our children.

There are a few medical complications that come along with having achondroplasia for example:

  • compression of the spinal cord
  • frequent ear infections
  • low muscle tone
  • hydrocephalus (excess fluid on the brain)
  • bowing of the legs
  • sleep apnea

However, these can greatly vary from person to person. For example, Andrew has had almost no issues with his health and I have had 2 spinal surgeries to correct compression of my spine and possibly facing a third.

The final thing I want to share is though I outline a lot of facts that make us different our daily life is just as average as yours. We graduated college, have careers, and are now married. Next week I will share more on our daily life and how we celebrate difference everyday.

Thank you so much for taking time to read this and learn a little more about Dwarfism! I’d love to hear from you! What questions do you have? I’d love to answer them! Email us at the address above or add a comment below!

 

If you want to learn more the information above came from:

http://www.lpaonline.org

 

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