WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Thursday, March 21, 2013

Go MitoAction!

This is a brilliant use of time and resources on the part of MitoAction!


MitoAction hosts Mitochondrial Disease Clinical Conference!


In an ongoing effort to improve mitochondrial disease patient care, MitoAction, in collaboration with the organization’s Medical Advisory Committee, will host the 2013 Mitochondrial Disease Clincial Conference on May 4, 2013 at Hotel Marlowe in Cambridge, MA.
(PRWEB) March 20, 2013
In an ongoing effort to improve mitochondrial disease patient care, MitoAction, in collaboration with the organization’s Medical Advisory Committee, will host the 2013 Mitochondrial Disease Clincial Conference on May 4, 2013 at Hotel Marlowe in Cambridge, MA.
The conference will offer physicians and specialists who are not mitochondrial experts an opportunity to understand more about identifying mitochondrial diseases, managing adults and children with mitochondrial disorders, and assisting patients with treatment options and coordinated care. Expert faculty will provide the most clinically relevant information with the intention of helping to educate healthcare providers about specific strategies for helping the mitochondrial disease patient. The conference has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of Tufts University School of Medicine (TUSM) and MitoAction.


Read more: http://www.newstimes.com/business/press-releases/article/MitoAction-hosts-Mitochondrial-Disease-Clinical-4369282.php#ixzz2OBOgtZrY


The fact is, we don't have enough Mito Specialists to go around. Fact is, as Mito Medicine evolves each Mito Specialist is developing and focusing on certain aspects of Mitochondrial Disease. Too many stories of Mito Patients being turned away, or Suspected Mito patients not getting care.. Not blaming Mito Specialists-they only have so much time,money and passion. Each focusing on certain types of Mito will be tremendously helpful down the road but fact is that many in Mito Population are not receiving adequate care. Also, we have seen in the past year that a lot of research about Mito is bleeding into Cancer, parkinson's, Dementia- which means less research on Primary Mitochondrial Disease patients- which is just making things harder for the patients and Drs. I googled Mitochondria and Cancer- WOW they are funding and researching like mad! Cancer is a better funded disease hands down- eventually the trickle down research will apply to the straight up Mito patients, but not today.



Family Drs and Peds are on ground zero. Too many have no idea about what Mito is.. if they do know often is a very generalized and outdated view. They have not been taught that Mitochondrial Disease is so incredibly individual in how it presents. They have not been taught that each patient even with the same gene mutation needs completely individualized care,may exhibit completely different symptoms and often have very different perspectives on how to treat their disease. I can honestly say that the family Drs. and Peds we have met over the years tend to be far more willing to help then any specialist Abby has seen but they don't know how to help. The only choice they have is to refer us.

Even if you find a Family Dr. who has treated another Mito patient, odds are it doesn't prepare them to treat you or yours- they have not been taught that more often then not what patient A needs, won't be what patient B needs.

I think between patient education and educating the Drs. who are in the trenches we can eliminate much of the reliance on Specialists. This would make care much easier for many Mito patients and better care. It would also allow Mito Specialists to focus on research instead of patient care- which benefits the Specialist, the family Dr. and most importantly the patient.

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