Mastocytosis

Cearna
Cearna Member Posts: 1
edited March 2014 in Emotional Support #1
im looking for someone to share stories with, im not a survivor, since there is no cure, am very supportive, and would like to find the same...btw im married, so dont need that kind of support 8)
this is a severely rare disease, and i just want to chat thanks in advance, Cearna

Comments

  • babs49242
    babs49242 Member Posts: 193
    #2
    you ARE a survivor EACH day that you breathe!!

    hugs and prayers.
    Cindie BC Survivor
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #3
    Cearna: At one time there were many diseases for which there are now cures and/or vaccines, to the extent that some are virtually non-existent...due to mankind's persistent effort and determination. It is not inherent in our nature to quit or to admit defeat. And it is important to be aware that a lack of a cure does not mean that something will not be developed within the next year or week or hour.

    While I salute your pragmatism and admire your courage, I am hopeful that your effort to find someone to talk to means that you have not become defeatist.

    Time is both your enemy and your friend. In the meantime, it is certain that if you carry forward with at least some hope and determination, and with humor and good will, you can bring much that is positive to the world.

    My thoughts are with you. I am sure you were NOT soliciting a pep talk, and I am equally sure that this sounds like one, but while I am not a person of religious faith, I do believe that we can carry forward with humor and a positive will and do good for the world, while we are here.

    As corny as that sounds, it is one thing I do believe.

    Take care.
  • TereB
    TereB Member Posts: 286 Member
    #4
    Hi Cearna,
    I have a rare cancer for which there is no cure but I consider myself a survivor, and I am not giving up hope. I enjoy life and have a good sense of humor which helps me a lot. I thank God every night for the day I had and for all the nice small things I didn't pay attention to before, like a beautiful sunset. Soccerfreaks has a nice message.
    You can email me here if you like.
  • Aussie39
    Aussie39 Member Posts: 1
    #5
    G'day Cearna, I was diagnosed with Systemic Mastocytosis about 7 years ago, after several years of misdiagnosis. I'm taking multiple medications and have intravenous treatment every 4 weeks at hospital. Have previously tried to find others with this condition to discuss with but have had no luck. I'd love to chat more with you,
    Cheers Bronwyn.

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