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Lets get DISH on the map

Posted , 6 users are following.

bettetheback
bettetheback

Following an email from patient.info about no one posting on this forum..... The reason I've not been posting is because I just keep hitting brick walls trying to get help or information about DISH.  So, I'm now posting to find out if there are any others out there interested in trying to get DISH on the map? We need to find some interested specialists, some keen patients and together move it up the information and research agendas.  Anyone interested? 

1 like, 14 replies

14 Replies

  • dan_16590
    dan_16590 bettetheback

    Posted

    Hi, I have found a link on facebook Forestiers/dish. see if you can find it. it is a closed group, but they happily accept new people. If you can't find ot let me know.

     

  • laura-c1988
    laura-c1988 bettetheback

    Posted

    I couldn't but notice this, my mum was diagnosed with this a few years ago an it's awful to watch her in pain everyday, very upsetting.

    I hope they find some kind of cure in the future as it's an awful disease. 

  • Veerle_D
    Veerle_D bettetheback

    Posted

    I'm interested.  I am a 46 years old woman and diagnosed one week ago.  Never heard of the condition before.  According to my doctor i'm very flexible and souple because I was always very sportive.  Now i wonder if running does good or bad?  Or should i choose something more like swimming?

    how does the condition develop?

    thanks!

  • philip14605
    philip14605 bettetheback

    Posted

    Hi,

    I have just been diagnosed with extensive DISH and feel the profile of the disease nees to be raised. Can I help in any way?

    • bettetheback
      bettetheback philip14605

      Posted

      Hi Philip.  Good timing.  I am just about to try and launch something.  Would you like to give me your direct email and I can give you more details and yes, I'm quite sure you could help! Thanks Bette. 
    • kathleen88143
      kathleen88143 philip14605

      Posted

      I too have been diagnosed with DISH 1 1/2 years ago. I have fusion in 50% of my spine. The specialists feel that I have had it for approx. 20 years or more. I am a woman age 66. I have limited mobility in my neck and I cannot get in or out of most vehicles. I frequently choke while eating and even swallowing my own saliva. I have thoracic pain 24/7. I am right handed and about two years ago I had to train myself to use my left hand to clean myself after a bowel movement. I have a very difficult time getting up when lying down. My pain is worse during the night. I am very stiff in the morning. I have a difficult time reaching up over my head. I have difficulty getting down on my knees and need assistance to get up. I have two large bumps growing on the top of my right foot. They are approx. an inch in diameter and they are hard like bone and they hurt. They have appeared in the last two months about two weeks apart. When I sit down my tailbone hurts even if I am sitting on a soft chair. I was taking 500 mg. of naproxen a few times a day and had to stop because I had blood in my stool. Cortisone does not work for me. Nothing does. I get temporary relief with a heating pad. I have been to a rheumatologist who confirmed that I have DISH. He could not do anything for me . I went to a pain management doctor who ran nerve tests from my brain to my feet. Besides confirming that I have DISH it was also established that I am hypermobile--- the other extreme. He couldn't do anything for me and recommended a neurologist in Toronto with the understanding that In all probability that he wouldn't be able to do anything for me. He couldn't.

      I also lose my balance and fall to the left. I sleep approx. 4 hours a night if I am lucky. The hard part of all this is that your family and friends do not understand at all what you are going through. I have been athletic for most of my life and now I can barely walk for less than 10 minutes on hard surfaces without feeling absolutely exhausted and in pain which seems start at my feet and works its way up my legs and to my spine and all the way up to the base of my skull. 

      Do I want DISH out there---do I want to find a cure----will I be part of a research study-----the answer is obvious. What can we do? Sign me up!

      Kathleen R Ontario Canada

       

  • kathleen88143
    kathleen88143 bettetheback

    Posted

    Yes I agree that DISH should be put on the map. I am very interested. How do we get started

    Please read my history which was posted to philip 14605

    • bettetheback
      bettetheback kathleen88143

      Posted

      Hello.

      Thank you for your interest.  My efforts are at a very early stage - working with specialist researchers in the UK on developing good quality literature reviews with the aim of identifying key research areas relevant to DISH which might be possibilities to take forward into research funding applications. I will post on here as and when progress is made.   In the meantime, I see someone else has directed you to the two Facebook Groups which you may find useful. One occasionally has some interesting research papers posted on it. The other is, I believe, rather more like a self-help/sharing problems group.  

      For me? Keeping active, keeping flexible, specialist physio and Pilates, good pain management and an anti-inflammatory diet serve me well.  

      Good luck, take care and thank you for your interest.  Do please keep in touch.  

  • dan_16590
    dan_16590 bettetheback

    Posted

    Kathleen:

    the best place to connect with others who suffer from DISH is on Facebook. Look up Forestiers/Dish to find it. They have done a great amount of effort to research the disease and get the attention of the medical establishment, 

    It is a miserable disease. Only advice I have is that my taking magnesium and Vitamin D has been helpful, but certainly not a cure. My level of disease is still in the early stages, so I don't know if it would help you or not.  

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