Hello everyone!
Some personal info about my experience: I am 22 years old. I developed Collagenous Colitis in late 2014 at 16 years young, diagnosed in 2016 (I can thank my parents and doctors for the healthcare gas-lighting and negligence that accounted for the two year gap time between the first signs of disease and my diagnosis.) It was only when I turned 18 and was able to seek answers for myself and by myself, that I received a diagnosis. However, I quickly realized after trying numerous medications that only worsened my health, that mainstream medicine was not going to give me the healing and answers I needed. I'm not sure how it took so long for me to find this MC support group and Foundation, but it has brought me so much hope, hope that I had completely lost over the years of trials and seemingly unending error. I was suicidal many times over, and recently too. I just bought the first "Microscopic Colitis" book by Wayne Persky today, I am taking notes on so many posts from this forum, and I have for the first time EVER found a group of individuals who have exactly what I am going through. I haven't had a sense of community for so many years... and I have gained so much in such little time just by discovering this site. The more I read, the more I need to keep reading and the more I want to know, and the more I want to be able to help others like us. There is no other option, there is no other thing I can do with this life.
Is anyone directly or indirectly involved (volunteer or career wise) with advocating for MC? What kind of jobs, entities, foundations, etc. can I become a part of to help spread the word of MC and how to treat it? How do I get mainstream doctors to accept it, to open the public to this underrepresented health crisis, to make any kind of change that helps us to be heard and to be helped? I would love to hear of any and all ideas PLEASE! I first thought maybe my career would be in recipe development, but I recognize we are all so different in our safe and unsafe foods that it may not be worth creating if it is not applicable to the majority.
Wayne Persky, if you ever get to reading this post, I need you to know that the work you've put into researching MC and educating so many on here is so noble and insurmountable. I'm sure there are other names to be accounted for and I just don't know who else to thank yet, but I have never been so inspired. Before finding you and this support group, I truly believed I was going to live a tragic life in quiet desperation, but I think I may be finally developing a sense of purpose. Thank you from the bottom of my heart for all that you have done and continue to do.
RE: How do I make a career of my Colitis?
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RE: How do I make a career of my Colitis?
Collagenous Colitis
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"Find hope in the present."
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"Find hope in the present."
Re: RE: How do I make a career of my Colitis?
Hello Sarah,
Thank you for the kind words. If you're as serious about advocating for this disease as you appear to be (and I assume you are), there's definitely a future role waiting for you — a huge role, if you're willing to devote the time and effort needed to successfully pursue it. The first thing we would need to do is get you nominated and approved for a position on the board of directors of the Microscopic Colitis Foundation. Then we can proceed from there, if you're interested.
Alternatively, you could work for the Foundation as an advocate, or as a grant manager, instead. There are various options.
Tex (Wayne)
Thank you for the kind words. If you're as serious about advocating for this disease as you appear to be (and I assume you are), there's definitely a future role waiting for you — a huge role, if you're willing to devote the time and effort needed to successfully pursue it. The first thing we would need to do is get you nominated and approved for a position on the board of directors of the Microscopic Colitis Foundation. Then we can proceed from there, if you're interested.
Alternatively, you could work for the Foundation as an advocate, or as a grant manager, instead. There are various options.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: RE: How do I make a career of my Colitis?
Hey Wayne!!!
My name is spelt as Serah:) Thank you so much for responding!
I am very serious and very interested in exploring those options. I don't know what the best option is or the difference between the two directions you've presented, but I would love some more information about both to see which one would be the best fit for me. I am unemployed at this time, so I do have a lot of free time to be invested in figuring out what role is the right role and how to start. Feel free to PM me too.
My name is spelt as Serah:) Thank you so much for responding!
I am very serious and very interested in exploring those options. I don't know what the best option is or the difference between the two directions you've presented, but I would love some more information about both to see which one would be the best fit for me. I am unemployed at this time, so I do have a lot of free time to be invested in figuring out what role is the right role and how to start. Feel free to PM me too.
Collagenous Colitis
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"Find hope in the present."
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"Find hope in the present."
Re: RE: How do I make a career of my Colitis?
Sorry about the spelling — at my age my vision is not one of my fortes.
I'll send you a PM
Tex
I'll send you a PM
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: RE: How do I make a career of my Colitis?
No worries about it! Perfect, I hope to hear from you soon:)
Collagenous Colitis
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"Find hope in the present."
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"Find hope in the present."
Re: RE: How do I make a career of my Colitis?
I sent a PM yesterday.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: RE: How do I make a career of my Colitis?
Strange. I sent you a PM about not having received your PM just now. If you didn’t receive my PM, please respond here to let me know. Thanks!
Collagenous Colitis
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"Find hope in the present."
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"Find hope in the present."
Re: RE: How do I make a career of my Colitis?
Nope, apparently the PM system leaves a lot to be desired, because it was becoming obvious that you never received my PM, either. Obviously it's too easy to make a misstep when sending a PM. I'll try an email. That should be more reliable because it will go through our regular email clients, rather than the php interpreter.Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.