Monthly Archives: February 2015

Rare Disease Day (2/28/15)

World Rare Disease Day is this Saturday, February 28th, 2015! I decided to dedicate this post to raise some awareness of rare diseases as a whole. I hope you will take a few minutes to read the facts, watch the videos, and share this post with a friend! Thank you. :)

  • In the United States, a disease is considered “rare” if it affects fewer than 200,000 individuals.
  • There are 30 million people in the U.S. currently living with a rare disease.
    (1 in 10 or 10% of the country)
  • There are around 7,000 different types of rare diseases and disorders.
  • If all the people with rare diseases lived in one country, it would be the world’s 3rd most populous country.
  • Approximately 80% of rare diseases are caused by a faulty gene.
  • 50% of the people affected by rare diseases are kids.
  • 80% of rare diseases are genetic, like FOP. (Genetic disorders are present throughout the person’s life even if their symptoms aren’t immediate.)
  • 95% of rare diseases don’t have a single FDA approved drug treatment.

Global Genes
Rare Disease Day


Show your support on Facebook!

  1. International FOP Association
  2. Global Genes Project
  3. Rare Disease Day

“RSVP” to the World Rare Disease Day 2015 Facebook event – invite your friends!


Lindsay-Jazz-Alex_Disney2013

Disney World 2013 with FOP friends (25th IFOPA Anniversary)

globalgenes.org


Informational Videos

Video 1
Video 2


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Winter Health Update

Screen Shot 2015-02-23 at 12.17.38 AMThe past few months have been frustrating for me due to the freezing cold weather and the insane amount of snow that Connecticut has gotten over the course of a month (it’s only been a month!?). Because of FOP’s progression the past couple of years, it has become more difficult for me to remain active during the winter months (usually late November – early March) for several reasons.

1) My immune system isn’t as strong as a “healthy” person’s, so I am extremely susceptible to bacterial and viral infections. It’s my personal choice to avoid large crowds during this time and lessen my chances of getting sick. Also, I like to be able to say that I’m hibernating.

2) Somehow, no matter how warm and cozy the house is, my body seems to know when it’s winter. I often experience a moderate to intense amount of pain that lasts several days to a week. This pain combination (my neck, chest bone, and tailbone) has unfortunately become nearly second nature to me. I believe the pain is due to my severe scoliosis (from FOP, not able to be fixed) and the way my neck is abnormally tilted (shrug your left shoulder – that’s basically how mine is permanently). The hardest part about experiencing this intensity of pain is that normal pain medication (Tylenol, Ibuprofen, and even stronger medication like Tramadol) doesn’t dull it at all. *

3) My muscles and joints often feel stiff from the cold weather, so it’s physically taxing for me to travel in the winter (especially during exceedingly cold temperatures or bad weather). My energy is spent much quicker.

The solution to Reason #1 (listed above) doesn’t necessarily mean that Staying Inside to Avoid Getting Sick would work 100% of the time. I seem to catch infections easily, since I recently experienced a really awful case of the stomach flu last weekend. I haven’t been out of the house in about a month, so I’m not quite sure how I got it.

But anyway, having the flu is not something that anyone ever wants, let alone someone with medical complications. I wasn’t able to keep any food or liquids (besides sips of water) down for two days, making me progressively weaker by the hour. The motion and severity of this occurrence took its toll on me. I later developed a minor flareup on my chest bone (which is already quite affected from FOP, it’s somewhat pronounced with extra bone growth), but I’m not sure if it caused any progression. If so, it’s not noticeable to me anymore and hasn’t affected my daily life. By the third day, I was on the mend and survived the remaining 48 hours on saltine crackers, homemade chicken noodle soup (thank you, mom!!), rainbow sherbet, & other light meals. (And now I have a deeper appreciation for food.)

brian-tracy-control-your-attitudeThroughout all of the sickness and pain that I’m dealt, I always try to keep in mind that there will be better days again. A positive attitude is one of the most important things to maintain, especially when you’re going through a tough time. I find a lot of comfort and strength in God, my family (including our fluffy Maine Coon cat, Prancer), music, and, of course, writing.


* Every single individual with FOP is affected by the condition differently, so they may have contrasting viewpoints or experiences. We all choose which methods of painkillers work for us (if any) and we find ways to cope.


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First post!

Hi! I’m Jasmin.

This is my first ever blog post and, to be honest, I’ve been a little hesitant to start. Though many people have encouraged me and have shown support of the idea, I needed to make sure I felt ready to share such personal posts with everyone. I’ve been spending the past few months writing nearly every day, mostly in preparation for new posts (also because I love to write). I wanted a way to be able to share more of my story than I’ve ever shared before.

I was diagnosed with a rare, debilitating bone disease known as Fibrodysplasia Ossificans Progressiva (FOP) when I was 5 1/2 years old. FOP causes my muscles and connective tissues to turn to bone, gradually creating a “second” immobilizing skeleton. This condition is painful, spontaneous, and progressive. There are less than 300 known cases in the United States and 800 worldwide.

Living with a serious illness is often challenging and frustrating, but I’m determined to not let it define who I am or stop me from achieving a goal or dream. I have a strong faith in God, a crazy love for cats, and a lot of positivity and joy in my heart.

I’m excited to finally make this blog public! It’s been on my mind for the longest time. Feel free to post a comment, share with a friend, or subscribe via email! xo

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