My son has Medium Chain Acyl CoA Dehydrogenase Deficiency (MCAD) and noone knows what I'm talking about. My son's condition is life threating and noone can help me because this condition is hidin. Things like MCAD should be announced for others to know. When watching t.v. we see things about ADD or ADHD and yes the children who have this condition need help but what about the children who have conditions that noone knows about. How do we get help? How does the world know that these conditions exist when they are hidin. I had never even heard of MCAD when I received the phone call that my son had a life threating condition. I thank God that the new born screenings are done. That's how his condition was found. I just want to know how we get help for our children and conditions. Please someone tell me how to spread the news about diseases that noone knows about.
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Diseases that noone talks/knows about
- By MCADMOM
- Posted December 27, 2006 at 8:46 pm · 9 replies
- In How my disease has changed my life
- Shared with the public
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- By gale
- Posted December 31, 2006 at 8:32 pm
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Since there seems to be a need for education with this illness, perhaps you might want to be the one to start this endeavor.
I help out in another non profit organization. One of the founders was a strong woman that was seeking answers for her son and her husband. Her husband is now gone, but she is the force behind the organization.
Wishing you the best.
- By kali
- Posted January 1, 2007 at 11:12 am
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Gale, I love your idea and hope that MCADMOM does explain this disease to us. Not only that, I had a nuerologist who slipped and fell and hurt her back. I went for a test and she came hobbling in. Her words to me were, "Anything that I am experiencing right now in pain I never learned in text. Now I can better appreciate and understand my patients."My Doctor for ADHD also has ADD and he too thinks the same way. You have to have or live with the disease to fully understand it
When I get the chance I will explain about the huadrinitis.
kali
- By kali
- Posted January 1, 2007 at 6:04 pm
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Something like this obviously needs education and brought to the attention to the public as well as schools.
Have you thought about contacting one of your local radio talk show hosts and going on the radio with this. I am sure there are others in your community. Maybe only a few but at least some to get you going.
Retiring from the media I can tell you it is a very simple thing to do. Keep in mind that producers pound there brains out from day to day trting to think of something for a show. So your situation is a great topic. You may consider inviting someone from the school, a doctor someone from the school committee etc. I have had as many as 7 at the table with me. They also do the promo's for you so you just have to ask if this will be promoted during the week before it is air time.
Good Luck. :)
- By LadyKitty
- Posted January 2, 2007 at 11:02 am
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Hello:
So sorry to hear about your sons condition. May I suggest that you start some sort of information organization for MCAD. One of my family members died from a rare, neurological disorder in 2000 and I started a non-profit, information organization. With the encouragement and support of family doctors, family and friends, we have done excellently and the feedback has been wonderful. We will be celebrating our 5 year anniversary this coming spring.
Hope this gives you some direction.
- By hkirkwood
- Posted February 5, 2007 at 10:10 pm
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I know how frustrated you must feel. When our disease organization started 14 years ago, there were only 25 known cases outside of Puerto Rico (where it happens most frequently). Today we're up to roughly 400 and we're finding an average of one new family a week. I'll list a few ideas, but you may have already thought of them.
1. You said your son's condition was picked up by infant screening? Is there a patient group out there? Infant screening doesn't just happen. It's sorely needed for many, many conditions that aren't currently tested for - so I wonder if there was ever an active patient group that helped to push for that?
2. Going to the media is great, but especially in larger media markets it helps to have an angle worked out. Unfortunately, there are thousands of people with rare, life threatening diseases that no one knows about so especially the larger outlets, hear this story again and again. So, if you can relate it to a bigger issue somehow that's helpful. Maybe its a story on the value of infant screening since that's how your son's condition was caught. Is this disorder tested for in all states?
3. Sometimes certian disorders have characteristics that are less uncommon. For example, I have Hermansky-Pudlak Syndrome. One of the "symptoms" is albinism. So, I belong to every albinism-related listserv I can find. Yes, I pump information about HPS, but I also try to make an effort to really become a part of that community. If everyone thinks you're only interested in y our own cause, they'll tune you out pretty quickly. Another one for us is pulmonary fibrosis. So, I try to get involved in anything pulmonary fibrosis related. Is there a "symptom" that would likely be noticed first, and when you go to search for information about that, is there anything about your disorder there? If not, what is there and can you partner with that entity to get your information included.
4. It's easier to get noticed if you can find others. If you don't know of anyone, is there any doc. whose writing papers about this, or whose got a study going on or anything like that? Get in touch and ask them to pass your information on - the success of this one really depends on the doc involved.
Just a few thoughts.....best of luck!
Heather
www.heatherkirkwood.blogspot.com
- By realitycheck
- Posted May 2, 2007 at 9:43 am
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If anybody ever tells you your body is trying to kill you...........RUN! If life is all around us.....why are we humans dying???? Most illnesses or dis-EASES are coz the body cant handle the current offerings of sustenance or education. Try, if you dare, a 30 day water fast, (kids are great on fruit) or check out www.dontolmaninternational.com for INTERESTING information about food and in todays society. Or get the FDR. Or If you want to continue believing what youve been told by money hungry institutions.....dont. May the force be with you. (the institution of "find out for yourself instead of getting scared witless by the doctors" is much more intelligent than conforming to mis-represented, dollar gathering falsifications about healthcare.) Check it out.......it doesnt hurt a bit!
- By realitycheck
- Posted May 2, 2007 at 9:46 am
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Take away the M and you have CAD..........Take away the C and you have MAD......what are these things trying to tell you about Doctors?????
- By realitycheck
- Posted May 2, 2007 at 10:01 am
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something ive always found interesting is that the prefix "DOC" is also used in words such as "DOCumentary" and "DOCile", and "inDOCtrination"....implying that the meaning of "DOC" is purely about the dictatorship or lack of information.........perhaps the DOCtors of our society need to be a little more helpful rather than keeping us under the thumb of fear through no knowledge at all???
- By Jsmum
- Posted October 18, 2009 at 7:02 pm
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My son also has MCAD and I agree there isn't a lot of info about. However MCAD also has different strains and can manifest itself a lot differently in one person to another.
realitychecks...i suggest you do what your name is, check reality. If I did what you would suggest my son would die. He cannot go without food/sugar/carbohydrate for long, by giving him fruit and nothing else to 'cleanse; I would be literally starving him to death.
Think before you type.
To the OP if you want to contact me, feel free to do so :-) There is also a charity called CLIMB that helps to raise some awareness.
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