I am excited to announce that Mito Families! is hosting a Christmas Card Exchange!
If you are affected or suspected of being affected by mitochondrial disease whether you are an adult, teen, or child you are welcome to join our Christmas Card Exchange. This is a worldwide event that based around the love we feel for each other to fight this disease together.
I would like to have us all keep eagle eyes for any person with mito that is in the hospital within 2 days of any of the holidays. We can then send them e-cards via their hospital (if they have that service) so they don't feel alone in the hospital.
There are lots of questions about what is going on and what I am asking from you. Lets keep this SIMPLE friends! Here is the starting place a questionaire I created.
I am open to helping families with the card exchange and with any concerns you may have. You can email me at gfcfmomofmany (@) yahoo.com
Friday, November 4, 2011
Thursday, November 3, 2011
Mito tends to bring friends
Mitochondrial disease is a whole body issue. While it may affect some areas more than others due to the exact gene and energy complex affected. The whole body is at high risk. One of the main symptoms of mito is to have more than one major body system compromised.
Simply meaning mito brings friends...
Mito is generally associated with muscle weakness, energy loss, and progressive disease course. Along with that can come mild to severe problems in your eyes, digestive system, autoimmune problems, bone marrow shut down.... and the list continues on and on.
If you think you are experiencing additional symptoms that are not being covered by your current care you may need to seek out additional specialist help.
For example: I began losing hair. Not just a little bit but hand fulls. No doctor had any ideas why. They knew I was suspected of having mitochondrial disease. That was not the cause in their opinion.
I had to do some web searches, call some friends, quiz every doctor I saw for possibilities. One possibility came up several times from several different angles, lupus.
I went to nearby lupus center and had a ton of labs, and tests run on me. The doctor poured over my record. My autoimmune system had gone out of control. I had lupus and several other autoimmune issues.
The doctor started me on medication to get my lupus under control and that helped my mito symptoms. There is a delicate balance that has to be found. Keeping the your secondary issue from causing your mito to progress and keeping your secondary issue from progressing because you aren't treating it aggressively enough.
The funny sad thing is to have mito and another disease like lupus I have had to deal with doctors that could only focus on one or the other. This is where going to a medical center that deals with mitochondrial disease and has a large group of specialists that can talk directly with a mito specialist is helpful.
Mitochondrial disease is not simple, and as the disease progresses it will get more complicated. Be on your toes and encourage your doctors to always check the simple answers, before assuming that mito is the reason behind new symptoms.
Stay strong my friends!
Mito is generally associated with muscle weakness, energy loss, and progressive disease course. Along with that can come mild to severe problems in your eyes, digestive system, autoimmune problems, bone marrow shut down.... and the list continues on and on.
If you think you are experiencing additional symptoms that are not being covered by your current care you may need to seek out additional specialist help.
For example: I began losing hair. Not just a little bit but hand fulls. No doctor had any ideas why. They knew I was suspected of having mitochondrial disease. That was not the cause in their opinion.
I had to do some web searches, call some friends, quiz every doctor I saw for possibilities. One possibility came up several times from several different angles, lupus.
I went to nearby lupus center and had a ton of labs, and tests run on me. The doctor poured over my record. My autoimmune system had gone out of control. I had lupus and several other autoimmune issues.
The doctor started me on medication to get my lupus under control and that helped my mito symptoms. There is a delicate balance that has to be found. Keeping the your secondary issue from causing your mito to progress and keeping your secondary issue from progressing because you aren't treating it aggressively enough.
The funny sad thing is to have mito and another disease like lupus I have had to deal with doctors that could only focus on one or the other. This is where going to a medical center that deals with mitochondrial disease and has a large group of specialists that can talk directly with a mito specialist is helpful.
Mitochondrial disease is not simple, and as the disease progresses it will get more complicated. Be on your toes and encourage your doctors to always check the simple answers, before assuming that mito is the reason behind new symptoms.
Stay strong my friends!
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