Dwarfism Post #9

I’ve had many people ask me if I’ve ever thought of having children of my own. I decided at a young age that I would not physically have children of my own. I always said I’d adopt if I decided to have children. When I was a young adult doctors advised against me having children. The risks were to high, not only for me but also for the child.

This is how it works for little people if they have children.

If the person has a dominant Gene, and decides to be with a person who has the SAME type of dwarfism OR be with an average height person, its 50/50
-50% chance of having the same type of dwarfism
-50% chance of being average height

If two people with DIFFERENT types of DOMINANT dwarfism Gene its 25% chance.
-25% of one form of dwarfism
-25% of the other form of dwarfism
-25% of being average height
-25% of having BOTH forms of dwarfism. We call this double dwarf. This will cause a bit more medical issues and possible learning delays.

Saul Wilson Syndrome is a dominant gene.

I don’t have children of my own but I have 13 nieces and nephews who I love just as if they were my own!

Posted in My Blog | Leave a comment

Dwarfism Post #8

Some people often wonder what the correct terminology for a person with dwarfism. Examples of what is acceptable: the persons name, little person, person with dwarfism or LP.

The term midget is offensive to most little people and is often referred to as the “m” word. Any time I hear someone use that word I try to educate them on how it’s offensive and ask that people not use that word and ask that person to educate others whenever they hear someone use it.

Posted in My Blog | Leave a comment

Dwarfism Post # 7

Dwarfism Fact # 7:

Little people face many challenges in life. Driving is one of those challenges. When I turned 16 years old I took driving classes through vocational rehab, who also helped me decide If pedal extensions or hand controls would be better. After taking a quick drive around the parking lot using hand controls I decided pedal extensions were better for me. I took months of driving classes and vocational rehab helped me get my car equipped with the right equipment and then I was ready to drive! For me to drive I use pedal extensions, a child’s booster seat with pillows (to help me see over the wheel) and I had to get special permission to have the airbag turned off.
Posted in My Blog | Leave a comment

Dwarfism Post #6

Dwarfism Awareness Post # 6 – Saul Wilson Syndrome is caused by a genetic mutation. SWS is a dominant gene and is not something I inherited from either of my parents. That is something that we only recently learned once doctors found the gene.

Posted in My Blog | Leave a comment

Dwarfism Post # 5

Dwarfism Awareness Post #5:

I love this quote because it explains exactly why I am who I am. No matter what I go through in life I always try to stay positive and keep a smile on my face. I always try and laugh and be happy.

But there have been times that what the world saw was me happy, laughing and always smiling but inside I was struggling more and more. When I was facing a lot of medical problems the Monica that the world saw was a completely different one than how I was feeling. Inside I was struggling to hold on and struggling to live life. Life has tried to know me down many many times but I always manage to keep fighting and get through the battles I face.

Posted in My Blog | Leave a comment

Dwarfism Awareness Fact #4

Dwarfism Awareness Fact #4:

My dwarfism makes me one in 500 million and a year ago on this day doctors confirmed it! It’s been a year since doctors release the medical article announcing they had found the gene that causes Saul Wilson Syndrome.

Doctors used the DNA that I provided seven years prior and studied a few other patients (and myself) at the National Institute of Health and gathered the research they needed to prove the article they had written. A year ago today this picture was used in press releases around the world and the story started to be shared more and more.

I advocate for my dwarfism because when I was growing up I didn’t have someone like me to do that and my dream has always been to help the others get answers I never had. I want them to know that someone like them cares that much.
Posted in My Blog | Leave a comment

Dwarfism Awareness Fact #3

Dwarfism Awareness Fact #3

I was diagnosed with Saul Wilson Syndrome around the age 4 or 5. When I was diagnosed it wasn’t called Saul Wilson Syndrome it was referred to as the more medical terminology, Osteodysplastic Microcephalic Dysplasia.

Back then all we had was the name. Doctors couldn’t tell me what would be expected of my life. They didn’t know what I would face and I would have to deal with each challenge as they came. That made for a rough childhood as I faced many surgeries and even more doctors appointments. But I grew up with an amazing family support system that got me through it all.

Posted in My Blog | Leave a comment

October 2nd Dwarfism Fact

October 2nd dwarfism awareness post:

Wow it’s been 6 years today that I had my right hip surgery.

This was the first surgery that I had gone in a week prior expecting to have surgery and woke up only to learn the doctors had to delay. It was a rough day when I woke up to find a nurse standing by my bedside scared to tell me the truth about the delay. I woke up and remember seeing the clock and the time on it wasn’t very long since I had gone under. I looked at the nurse and asking him “I didn’t have surgery did I?” To which his eyes got big and he said “let me go get your family.”

Upon waking up I could just tell that I didn’t wake up to a new hip. When I realized they couldn’t do surgery I became very emotional. I broke down and cried. I couldn’t help it I had been in pain for so long and endured several setbacks and now this one. I had been delayed several times due to bloodwork and other factors. So when I woke up on October 2, (6 years ago today) and realized surgery had been a success, I was so relieved!

I felt so good in fact that when they wheeled me into my hospital room I looked at my aunt and told her “are you going to get my Olive Garden now?” I was so hungry. And this was the picture she took of me.

Posted in My Blog | Leave a comment

October is National Dwarfism Awareness Month

October is National Dwarfism Awareness month. All month long I will be posting facts about dwarfism or stories about my life. I also share posts on Facebook and if anyone is interested in following me on Facebook my Blog Page is http://www.facebook.com/LittlePerson123

I would greatly appreciate your support.

October 1st post:

There are over 300 types of dwarfism and the type I have is called Saul Wilson Syndrome and it’s a very rare dwarfism. There are now believed to be 17 people who have been diagnosed with my dwarfism. I am the oldest female.

I am 31 years old and I grew up not having answers about my dwarfism. My mom, aunt and I would go to Little People of America conventions and talk with doctors or others in hopes that they could help me. I started going to the conventions when I was about 4 or 5 and it wasn’t until I was in my twenties that I found a doctor who was willing to help me in my search for answers.

Posted in My Blog | Leave a comment

It’s been seven years of writing

Seven years ago this month I started writing this blog. On September 18, 2012 this blog became official.

That was the year that I offered up my DNA to Dr. Andrew Jackson, from Scotland, the only doctor to ever come up to me at a convention and say “you have Saul Wilson Syndrome.” To which I replied “you know about my dwarfism.” Dr. Jackson had in fact heard about Saul Wilson Syndrome but only because he had read the very few medical articles that had been written at that time.

Now to paint a picture here this was a great shock to me, my mom and my aunt because at that time there were only two medical articles that had been written about SWS and I was in one of those articles. The other one was the original. For someone to have actually read those two articles and have an interest in learning more…was a miracle to me.

For years I had gone to these conventions and no doctor had ever had such an interest or even had heard about SWS. This was the turning point for Saul Wilson Syndrome and this was where it all started.

A doctor willing to help and me with the determination to get answers. I had the dwarfism he had the knowledge to help. It was at this point that my aunt told me “you need to start your blog.”

Now seven years later and we know the gene that causes SWS and we now have 14 confirmed diagnosis.

When I look back on these last seven years it truly amazes me at how much we have learned. Seven years ago I would type Saul Wilson Syndrome into google and the only thing you could find was the two articles written in the 90s.

Now you type Saul Wilson Syndrome into google and my blog comes up, the recent studies that have been done come up, the original articles come up. Finally the research and information is out there for others to find. That is truly a blessing. Finally answers!

Posted in My Blog | Leave a comment