Welcome to Dealing with Syringomyelia!

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Hello!!!

Lately, I’ve been feeling an urge to share my knowledge about Syringomyelia. I thought about blogging but honestly felt kind of afraid to do so as I am a private and shy person. Then I decided it was time to overcome this fear and just go for it. Why? Because I seriously believe people need to know about SM , in fact they should know that there are different weird and rare conditions out there that can change one’s life, their own lives.

This disorder is so rare even doctors are not aware of it, or don’t know much about it. I am referring to doctors all around the world and especially about doctors in my country, Haiti. I would love it if doctors could find the time to educate themselves about SM and every other disorder of such.

syringo9

As of today, there is no cure for Syringomyelia. Hopefully, we’ll get there someday.

I will tell you all about how I’ve been diagnosed, the symptoms I am having, and probably about my fears and my hopes. I’ll try my best to always post something, anything.

Feel free to share this blog with your family and friends.

Yours truly,

Natacha

25 thoughts on “Welcome to Dealing with Syringomyelia!

  1. Herve Salnave

    Courage ma fille. Tu n’es pas seule. Le seigneur sera toujours a tes cotes pour te guider et te soutenir chaque jour de ta vie. Que Dieu te garde, protege et te benisse!!!

    Herve

  2. Quitterie Elie

    Keep fighting Natacha. As the avid researcher that you are, keep doing all your researches to improve your everyday life, and hopefully to win this battle. I believe that you will win !!!

  3. Perrine

    Keep up the good work ! trying to bring awareness to a disease that you yourself is trying to understand and dealing with it, is a lot. I pray that God brings you the strength, courage you need to fight trough it… yes u CAN.

  4. Christele B Craan

    So proud of you . Continue researching and fighting for a good a cause . Very courageous of you for a shy person .
    Keep it on . Muahhh

  5. Jessica

    Wow what a great way to show awareness. This is awesome! And for what it’s worth your going to be okay! No worries.. Your doing a great thing here. Looking forward to reading your blog. Love You ❤️

  6. Lylianne

    Well Done Natou!!! Awareness is the first step to healing! Keep being positive and have faith in road our loving creator chose for you!

  7. Lisa DiFiore

    It took a lot of courage to share this about yourself but always remember that so many people have all different challenges so you are not different in that sense. Most important is that by telling others about your condition, it allows others to be there to listen, to care and to love you.

  8. noelle gaetjens

    Je ne crains rien pour toi, tu es quelqu’un de caractere fort! De plus avec ton” coeur d’or” je sais que Dieu veille toujours sur toi! Merci de partager avec nous! Love you so much!

  9. Krystel Epstein

    Talk talk talk … One banana a day … I laughed and i cried ! But yes , being positive like you is the best way to deal and as you said your family and friends are here to listen . Keep fighting , we’ll fight with you as well . That desease cant do anything to my Tatoo !!!!!!!!! #tatoopamnanpifokeou #oupapkafelanyen #lapkalewkanmenm
    Avoovoo

    • Thank you for sharing this link with us. Ofcourse there are doctors that are aware of SM. But there are a lot that aren’t too. And also, there are doctors who misunderstand SM since it is such a rare and complex disease. Many patients complain about the fact that their doctors are either unaware of SM or just don’t really know much about it. But some people in certain countries are lucky enough to have access to SM specialists too.

  10. Pascale Salnave

    Natou tu es tres forte. Je suis tres heureuse de voir comment tu livres ce combat le sourire aux levres. Avec ta force, ton courage et ton positivisme, tu auras raison de cette maladie. Meme quand tu tombes, tu sauras toujours te relever car tu es la plus forte ! Tu es une vraie battante. Et sache que tu n’es pas seule. Nous serons toujours la aupres de toi pour te tendre la main toutes les fois que tu en auras besoin.
    Love you ! Kiss kiss !
    Pascou

  11. Rébécca André

    Bonjour est-ce les mêmes symptômes la sclérose en plaque. Je sais que c est difficile mais les épreuves ne peuvent que nous rendre plus fort

    • Bonsoir,
      Je ne suis pas trop familiere avec les symptomes de la Sclerose en plaques mais je crois bien que les deux ont des symtomes en commun. En effet, tout cela nous rend plus fort. Merci de votre commentaire. 🙂

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