Wednesday, September 21, 2011
Mito Families!: The Financial Reality of Mito
Mito Families!: The Financial Reality of Mito: It's pretty safe to say that everyone knows that health care is expensive. The more chronic or serious your condition is the more expensive....
Mito helpers...
My genetics doctor asked me to email her some of the things I have been using to make my life a little more comfortable so she could pass the information on to her other patients - I wanted to share here for others and would love to hear from you about what has worked for you. I will start with what I use and need and what we are looking at getting.
Visually me and two of my children have Scotopic Sensitivity Syndrome or Irlen Syndrome - in short it is when the brain has trouble with the signals the eyes send. One can have 20/20 vision but have vision issues. One may suffer from dyslexia, migraines, ADD/ADHD, brain injury, light sensitivity and more. There is evidence that many people can be helped with the use of special colored overlays and special colored lenses. My 9 year old has been tested and is waiting for his glasses now. Next we will be getting my oldest son tested fr which colors he needs. And I have to get the money up for the lenses and I will be in color as well. I watched my son being tested and it was amazing to see the difference and I was tested for my colors and I was amazed at how much easier it was to read - and I am very proficient and read well at a good speed. I will update once the glasses get in and see how he does - he is having issues with the words "dancing" and depth perception. For further info: http://irlen.com/
Many days I have muscle cramping due to dehydration (which is easy to go into even with the best efforts), potassium issues, energy issues, etc. Sometimes it would be severe and sometimes it would just be enough to case my legs to give out when I walked. I found that "Fitness Gear" has a calf and shine support that has worked wonders for these issues. It is adjustable, it helps retain heat, and gives support. You can find it in store and online at Dick's Sporting Goods. *Note it does have natural rubber and may or may not cause an allergic reaction*
My 9 year old suffers from mito and also has a kidney condition and tends to overheat and has trouble regulating temperature. We are in the process of getting him a cooling vest. Now we were looking for something that is functional yet still looks "cool" he is not worried about it but we know how kids are and we wanted to minimize issues. We found an evaporating cooling vest - it has special non-toxic beads that are charge by soaking in water and wrung out and worn over a t-shirt. Some can provide cooling for up to 6-8 hours. We are going with: Techniche HyperKewl Evaporative Cooling PEAK Cycling Vestfrom Sears. Once we get it I will let you know how it worked for him.
Many time it is important to conserve energy or ave help when balance is off for one reason or another. Many have found crutches or wheelchairs to be a good option. I suggest forearm crutches becasue they allow for your hands to be free and they take less energy to use. Mine has a little attachable pouch to keep my money, ID's, or car key. Back packs are also the new purse... it is an easier way to keep snacks, medical letters, water, etc. with me at all times. They come in many styles and colors to fit your lifestyle. Also there are extra pads sold by a company to make things more comfortable: www.crutcheze.com
This is just what we are using now and looking into... I will add more if and when the needs arise.
Visually me and two of my children have Scotopic Sensitivity Syndrome or Irlen Syndrome - in short it is when the brain has trouble with the signals the eyes send. One can have 20/20 vision but have vision issues. One may suffer from dyslexia, migraines, ADD/ADHD, brain injury, light sensitivity and more. There is evidence that many people can be helped with the use of special colored overlays and special colored lenses. My 9 year old has been tested and is waiting for his glasses now. Next we will be getting my oldest son tested fr which colors he needs. And I have to get the money up for the lenses and I will be in color as well. I watched my son being tested and it was amazing to see the difference and I was tested for my colors and I was amazed at how much easier it was to read - and I am very proficient and read well at a good speed. I will update once the glasses get in and see how he does - he is having issues with the words "dancing" and depth perception. For further info: http://irlen.com/
Many days I have muscle cramping due to dehydration (which is easy to go into even with the best efforts), potassium issues, energy issues, etc. Sometimes it would be severe and sometimes it would just be enough to case my legs to give out when I walked. I found that "Fitness Gear" has a calf and shine support that has worked wonders for these issues. It is adjustable, it helps retain heat, and gives support. You can find it in store and online at Dick's Sporting Goods. *Note it does have natural rubber and may or may not cause an allergic reaction*
Many time it is important to conserve energy or ave help when balance is off for one reason or another. Many have found crutches or wheelchairs to be a good option. I suggest forearm crutches becasue they allow for your hands to be free and they take less energy to use. Mine has a little attachable pouch to keep my money, ID's, or car key. Back packs are also the new purse... it is an easier way to keep snacks, medical letters, water, etc. with me at all times. They come in many styles and colors to fit your lifestyle. Also there are extra pads sold by a company to make things more comfortable: www.crutcheze.com
Mitochondria... I've got the POWER!
The mitochondria are the powerhouses of the body. They convert food, air, water, etc. in to energy (ATP - adenosine triphosphate) approximately 90% of the bodies energy. If there is a flaw or missing piece to the puzzle then the body suffers. Think of a brown out - it would be like trying to run Atlanta's energy needs on a small rural towns power grid. Mitochondrial deficiency can affect any organ. Sometimes it can be something minor like allergies or minor asthma or complete respiratory failure. From minor reflux to to major dismotility of the whole GI tract.
A mitochondrial disorder/disease can appear at any age and to any degree of severity. Many times mito goes undiagnosed and sometime is not diagnosed until death. Even those that are spotted by a physician may go weeks, months or years before getting a solid diagnosis.
Currently there is no cure only treatment for symptoms. Which are usually supplements and not covered by most insurance companies. Also there is only 1 of the 40 different types of mito that is covered by any kind of clinic - Mitochondrial Myopathy affects the muscles severely and patients can be seen in MDA clinics.
Mitochondrial disease is "rare" but not. Many in the medical field have not heard of mito or if they have they know very little about it, yet it is as common as Cystic Fibrosis. It was once thought that mito could only be inherited from the mother (MtDNA - Mitochondrial DNA) but there is also autosomal recessive - a defective gene from each parent and finally there is denovo which is a singular genetic fluke.
For more information:
http://www.mda.org/publications/mitochondrial_myopathies.html
http://www.umdf.org
http://www.mitoaction.org/
A mitochondrial disorder/disease can appear at any age and to any degree of severity. Many times mito goes undiagnosed and sometime is not diagnosed until death. Even those that are spotted by a physician may go weeks, months or years before getting a solid diagnosis.
Currently there is no cure only treatment for symptoms. Which are usually supplements and not covered by most insurance companies. Also there is only 1 of the 40 different types of mito that is covered by any kind of clinic - Mitochondrial Myopathy affects the muscles severely and patients can be seen in MDA clinics.
Mitochondrial disease is "rare" but not. Many in the medical field have not heard of mito or if they have they know very little about it, yet it is as common as Cystic Fibrosis. It was once thought that mito could only be inherited from the mother (MtDNA - Mitochondrial DNA) but there is also autosomal recessive - a defective gene from each parent and finally there is denovo which is a singular genetic fluke.
http://www.mda.org/publications/mitochondrial_myopathies.html
http://www.umdf.org
http://www.mitoaction.org/
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