Please note: I wrote this prior to experiencing major flare-ups in 2019. My life has changed significantly since then and I’m still adapting to my “new normal.”
Hello! My name is Jasmin. I love traveling, going to concerts, public speaking, reading, and volunteering. I’m also very passionate about writing, which is partly why I wanted to start this blog. It’s been years in the making, but I’m anxious to be able to share my story and raise awareness of my rare disease.
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My parents and I moved from Wisconsin to Connecticut in July of 1998 after an exciting job offer. This was a huge deal for us because we didn’t know anyone in CT (or anywhere in New England) and would have to build a new life in a new state. As difficult as goodbyes were, things eventually seemed to be falling into place. I was getting ready to start Kindergarten and my parents were settling in and beginning to adjust to the changes.
And then our lives took a drastic turn…
I was five years old when my parents noticed something may be wrong with me. I had complained of a stiff neck on the way to school in the fall of the same year, but we assumed it was due to sleeping the wrong way and didn’t give it much thought.
By the end of the school day, my neck seemed to be slightly tilted in an abnormal position.
After meeting with four different doctors and having numerous genetic tests done I eventually got the diagnosis of Fibrodysplasia Ossificans Progressiva (FOP), an extremely rare and life-threatening bone disease, in January of 1999.
My disease can be quite difficult to explain and comprehend (even for me), so I’m quoting the International FOP Association’s website, www.ifopa.org.
One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.
FOP affects 1 in 2 million people, but there are only 800 confirmed cases worldwide.
I am one out of less than 300 with FOP in the United States.
I have lost full mobility in my neck and jaw, and partial mobility in my shoulders, elbows, and hips. I also deal with chronic pain, scoliosis, bony lesions on my back, and a restricted lung capacity due to the extra bone growth surrounding my rib cage.
This sudden diagnosis 18 years ago was understandably shocking and devastating for my parents, as well as for the rest of my family and friends. It was difficult for them to see me so happy, able-bodied, and carefree when I was younger, knowing that FOP would gradually progress and someday leave me feeling trapped in my own body.
As scary as life with FOP is, I’m very determined to maintain a positive attitude despite everything I’m faced with. I appreciate my journey and am grateful for my struggles and obstacles. I try to always find joy in the little things in life and notice the smallest of achievements.
My disease has taken so much away from me, but I can’t imagine my life without it. I see it as a sort of blessing in disguise, not a complete tragedy or misfortune. My circumstances have led me to incredible opportunities, lifelong friendships, strength, hope, determination, and happiness.
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You could try to understand you limiting condition by using Ayahuasca in Santo Daime, in Rio de Janeiro, Brazil, for at least 4 times (on concentration sessions).
Don’t use pure DMT. It’s too intense, too fast forward and lasts only 5 minutes. It can confuse you.
Each Ayahuasca session lasts 4 hours of duration and gives you enough time to test the strength of your mind and will.
You can control all the situation by closing and opening you eyes.
When you close your eyes you will see the inner world clearly. If you want to stop this simply open your eyes. You will have full control of the proccess.
All you imagine or create with your mind becomes real. Only take care of your “i-mag-in-aCtion”. Search for the Light.
You can ask for help and luminous beings can appear to support you as happened to me.
I’ve had misconception ideas about my life and about Life in general.
Now I’m in Peace.
You will understand what is the meaning of “Ilumination” or “Samadhi” or “Lotus of thousand petals” or simple “GOD”.
The “Force” and the huge bright “Light” showed in those sessions can heal you because you will understand you soul, your pain, your joy, your mission in this life.
You can “rememder” what caused your condition and you can work to overcome that.
It’s NOT based on faith or miracle. It’s based on real knowledge of yourself, of your deepest self.
Ayahuasca doesn’t cause dependency or submission, doesn’t cause flashbacks and doesn’t have collateral effects.
My soul loves your soul and maybe we can meet in our “dreams”. Follow my energy.
I wish you can find yourself in Joy.
Affectionately,
A brazilian bird
(My email is not real. I’m a public person and I hope you comprehend)
Hi Jasmin, I just wanted to thank you for sharing your story and helping to raise awareness of this disease; my niece has FOP as well. Your courage and willingness to share have made a huge impact!
#brave girl #strong girl , no words to elaborate your strength
Inspiring to everyone …
Always be happy..
Hi Jasmin, I saw your story on a newspaper. You are a strong girl, stay strong :)
Vira,
Jakarta, Indonesia
Hello Jasmin! I saw your story on a Argentinian’s newspaper. I wish you lots of luck and patience, you are strong!
Best wishes
Florencia
Buenos Aires, Argentina.
Jasmin, I saw your story on CNN and I just want to tell you how inspiring you are. Keep being you! Best wishes.
Mike
Buffalo, NY
I too have a health challenge, epilepsy, and I feel like a level of empathy and compassion comes with health struggles as well as a personal fighter within us that only we can understand. Stay strong, girl!
Lindsey
Please email anytime
lmlevitan@gmail.com
Praise God for your faith and making the best of your circumstances. I will keep you in my prayers!!!!
Jasmin you are such an inspiration. I love your positive energy despite the obstacles you face. Continue to let your light shine champion!
Jasmin, you have done an absolutely wonderful job with this blog! You certainly have a terrific talent for writing! I am in awe at your determination not to let FOP ruin your life, but to ‘like’ it and not fight against it. You are a true inspiration! Can’t wait for the concert on April 25th to honor you and raise awareness for FOP! Keep writing and keep the positive attitude! YOU ARE AMAZING!!!
I posted on your Twitter but I wasn’t sure where you’d see it first. I saw this article a few days ago about this three year old boy with the same disease. It’s so sad and scary. Very sorry you’re going through this. I follow Anthony Carbajal too. Being trapped inside your own body, whether it be ALS, FOP, or something else, is the most disgusting, torturous thing anyone can go through. http://www.foxnews.com/health/2015/02/25/disease-puts-3-year-old-boy-at-risk-becoming-human-mannequin/
Hi! Thank you for taking the time to comment, I appreciate it :) The progression aspect of both ALS & FOP is also one of the most frustrating things to have to go through. Anthony is the best. I’ve been so inspired by his strength!
Yes, he is amazing. I don’t suffer from anything, but I’ve known about ALS since early high school, and he is an inspiration to many. My husband’s grandfather died of ALS, so it is definitely something we keep up with. All these diseases need to be shared. I learned about your disease just a few days ago when I saw the article about the boy. I had heard about it previously, but I hadn’t actually read up on it. One of my favorite things to study, is rare diseases and syndromes. There are so many out there that people have never heard of and most, if not all of them, are life threatening things that don’t have a cure. We need more money put into medicine and research, and less money put into sports players pockets. Maybe then we’ll find a cure.
Yes, I completely agree with you on that. I think it’s so important to raise awareness of diseases like FOP and ALS, as well as all the other disorders that often go unnoticed. It will also help even more people get diagnosed and receive the proper care and community. Thank you for your interest and support and for reaching out. :)
Hi! I am someone else who also has FOP. I agree as well that more money should go into medicine and research and less into sports players pockets. Also it’s a bit of a coincidence that a few weeks back I was looking on Fox News. You know how at the bottom of an article it may suggest another article that you might be interested in? It suggested the article about the three year old boy and I was a bit surprised to find out as I was reading it that he had FOP.
You are awesome! It’s great to ‘hear’ your voice thru this. Keep up the writing.
Thank you, Casey! :)
Hi, Jasmine! What a wonderful start to your blog!! Your writing talent really shines. I was chronically ill for a long time with something not nearly as awful as FOP but I don’t think my attitude was ever as good as yours is. Keep it up, but I know I will understand if you want to complain sometimes, too! :). (I know your mom from church.)
Thank you so much! I really appreciate it. :)
SOOOOO glad you are writing about your journey. Can’t wait to learn more!
Heather
Thank you, Heather!!!
So excited that the world will get more of the Amazing Jasmin! If your first post is any indication there is no doubt the impact you will have. Totally Jazz(min)ed!
Thank you!!!!
I love it, Jas! you are incredible. Can’t wait to read more posts. xox
Thanks, Aria!! :)
I’m so glad you’re doing this! You are an excellent writer and I look forward to reading your thoughts in the future. You have touched and inspired so many people already and this will allow you to touch many more!
Thank you so much! Love you!! xo
I love it so far. I also love you!
I love you as well! :)
Since I haven’t seen you in quite a while, it was a pleasant surprise seeing your picture–a lovely young woman took over the lovely young child in my TV story about you at Eastford Elementary School! It will be nice getting first-hand info about what you’re up to and how you’re doing. And what a perfect way to get your story out to help others understand FOP. Congratulations on your courage to do this. Thank you for sharing.
Thank you for your kind words!!!
Jasmin, you are amazing. I remember you as a young child and now you’ve become a beautiful and wise woman. God bless you, and I look forward to your blogs. As always, you and your mom are in my prayers.
Thank you so much, Debbie!! xo
Jasmin, You are a blessing to all of us who know you. Thanks for sharing your story. God be with you on your (and your Mom’s) journey of faith. <3
Thank you, Dot!! You’re so kind. :)
Jasmine – My husband, Ron and I have followed your progress and ups and downs through the years through our daughter Carole Clark. Douglas Clark is our grandson.
I will follow the blog with pleasure – keep up the work, positive attitude and maintaining a joy of living!
Thank you so very much!! It truly means a lot. They are such wonderful people :)
Jasmine I am so happy to see you writing about your experience! Praying for you always.
Thank you Kelyn! Much love to all xo
God Bless you sweet heart…Prayers are being sent
Thank you :)
I enjoyed reading your blog very much and I hope you continue. I love your positive attitude. My grandson, Lincoln is 8 with FOP and was diagnosed at 2 1/2. I am glad that you are doing this and it is great to read about a young adult with FOP. Keep up with us!
Thank you, Robin! I definitely will :)
Jasmin
You are a creative soul finding new ways to define your life journey – amazing and inspirational! Blog on!
Bob
Thank you so much!! I appreciate it. :)
Usually I don’t have difficulty sharing my thoughts. However, as Jasmin’s mother, words seem to currently escape me. Therefore because I want to write something, transcendant (to go above or beyond (a limit, expectation, etc), as in degree or excellence) is all I can write at this time.
Thank you, dear mother! I love you! xo
Love this Jasmin! So beautifully written and can’t wait to read more!
I am actually writing my thesis on narrative medicine and bibliotherapy with teens/young adults and have started a blog of my own as an online resource for child life specialists for ideas for both getting teens/young adults to tell their own story (in various ways) and connect to the stories of others. Would you mind if at some point I linked your blog as an example when I write about helping patients start their own blogs? It’s such a great example of someone getting their voice out, raising awareness, and telling their own story!
Thank you, Melissa!! Yes, that would be awesome! I absolutely love the idea of encouraging patients to start their blogs. Let me know if you need anything else from me!
Thanks Jasmin! Maybe someday down the road we can write a collaborative piece once you’ve gotten to write a few more posts so that child life specialists can see from your point of view what it’s like to put yourself out there and write your story?
That sounds amazing! I would love to :)
What an amazing beautiful person you are your story will inspire so many people (like myself) to keep things in proper perspective. I look forward to reading whatever you write – a book maybe????
Thank you!! Yes, writing a book is a definite interest of mine!
I was so happy to see this post, by a friend Carol, I remember meeting you and your mom at a craft fair. I am so happy, to see that you have grown into such a fine positive young lady. I remember you as a beautiful, happy, little girl. My God keep you in his amazing grace.
Hi Judith! Thank you so much, your comment means a lot to me. Having my card company at the fair was always an amazing experience for us!!
Jasmin,
You are such a wonderful, beautiful person! Your blog is going to reach and speak to many people. I am excited to follow your blog! Good luck (:
Stacey
Thank you, Stacey!!! :)
Your positive attitude and zest for life always amazes me. It has been such a pleasure getting to know you over the years and watching you develop into a young woman that continues to inspire so many. Congratulations on your blog – you’re off to a great start and I look forward to each and every post!
Pattie Basile
Thank you so much, Pattie! I really appreciate it :) hope to see you soon!! xoxo