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.

Friday, March 14, 2014

Censored.



For many with Mitochondrial Disease their disease process prevents them or their families from leading normal social lives. Often these families are restricted to the home for the protection or care of their loved one.


Many are much like our family and DEPEND on the internet to be able to reach out and have human contact.


Mitochondrial Disease families face a lot more then just the loss of energy.


The loss of a social life

The loss of friends

The loss of family(hard to participate in camping,family events,parties,graduations etc)

The loss of watching their child grow and participate in school,sports, birthday parties,dating,proms, marriage and more.

The loss of their child because of either Mito or Child Protective Services.



A parent of a child with Mito may deal with Drs. who judge or do not believe in Mito. They may deal with family who simply cannot understand what their child is suffering on a daily basis.


I am lucky. I don't mind skipping out on the spa,starbucks, meeting the girls for lunch, walks for raising money, conferences, parties, and other social events. We find that the less exposure Abby gets to germs and unnecessary energy loss the better she does. I suspect our introverted life style is partially responsible for why despite her many health issues she has done so well.

We do however depend heavily on our friends online. For us, it at times is all the social and emotional outlet we have each day. I know many other Mito Families like ours that without their online Community they have been cut off from the only healthy outlet they have left. Their online community is the only safe place to share their deepest darkest fears.


Recently, many people have felt that the UMDF has been discouraging any discussion about Justina and the horror her family and she have been dealing with...many people have expressed that their posts to the UMDF facebook support group discussions have been banned/blocked/removed. To me this makes me feel just like I would if some public organization tried to censor any talk about the Holocaust. I can't say for sure if the UMDF is purposefully doing such things but enough people have expressed frustration, that I just wanted to offer my opinion about it.

Honestly, I am puzzled. If it is true, then for me this would be like going to an AA(alcoholics anonymous )meeting and being told you cannot talk about alcohol because it is too upsetting to a few of the members... wonder what type of people would be showing up for that kind of help? But I can understand as well. Every organization, and every person for that matter has the right to control their public image and if the UMDF wishes to keep themselves removed from certain topics or issues,no matter what part these issues play in the life of some Mito patients, then that of course is their right.

But I am saddened that our most well recognized non-profit for Mito isn't allowing families like mine to share our feelings about a topic that is a part of having Mito for some Mito families.

The Justina horrific situation is not just about CPS. It is a reflection of how very little our Government, Drs, schools have learned about Mito despite years and hundreds of thousands of donation dollars. Clearly, even though Mito was first defined well over 30 years ago, we have failed to educate the Public. Until we take a different approach, use our donated dollars in a different way, this will continue to plague Mito Patients.

Again, it is their right to censor their facebook page. And if that is what they are doing, then so be it.

I say this because it is my right to NOT support their organization, or at least that part of of their decision making if this is in fact true.


Right now besides Mitoaction there are a number of facebook groups that support Mito patients and all of the unfortunate issues they are faced with. For me, they are better aligned with the needs of my family because we want to be able to share our own fears and horror stories, and to be able to openly support other people who face their own scary and terrifying experiences as Mito Patients. For me and my family, we find comfort in knowing that others will listen to us in our difficult times, and lend us moral and emotional support, and we value that we can return the favor to others in their times of need.

Bottom line, if you don't like being unable to share what bothers you as a Mito family? Find a new group. Plenty of them out there.

6 comments:

Clarissa said...

good post. i agree with everything. we are a "home bound" family because of our Abi, and I also believe it has kept her "healthy" despite having mito... and we do miss out on a ton of family things and "normal" things... but i don't think we are suffering from it and i like our lifestyle and slow paced life! :)

Diane said...

I think you have the 4th Abby-Abbi-Abbie I have chatted with in 3 days :-) Great mind think alike when it comes to naming children. I know for some patients it doesn't seem to bother their energy or cause them to pick up cold after cold to be on the go, but some like our's sure benefit from a slower, home based approach. There are definitely benefits to this way of living. It makes up for the things we miss out on. Hugs!

Kristy Williams said...

My online friends are my support for a multitude of things that 3d people don't understand for whatever reason. We are frequently home bound between allergies & anxiety. Feels like our own little island in a way. I couldn't imagine my life without the online support!

Jenna said...

I 100% agree. As soon as they said they were going to monitor all post to make sure rules we followed I left the group. There are many other groups out there and I don't want to support the UMDF right now in any way.

Diane said...

Jenna, if you aren't already at the MitoAction facebook page, come on over! I would love to have you there too with all my other favorite people! Hugs!

Diane said...

Here is a link of vodka's(and other alcoholic items)with comments from the corn-free list. I don't know which ones are also safe for celiacs. Abby is gluten intolerant but not allergic to wheat or celiac so the corn is a much greater issue for her. There is a grape vodka I think many are using that is called Ciroc, though I cannot say absolutely it is corn free but I have seen it recommended for those who are avoiding gluten. Here is the link to the list; http://corn-freefoods.blogspot.com/2011/06/corn-free-bar-menu-list.html?m=1

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