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Life with a chronic illness isn't all about spoons and complaining.
About Me
- Bridget
- I've been living with a rare neoplastic disease called Systemic Mastocytosis for a few years now. I want to use this space to detail my experiences with this illness, as well as to hopefully show other people suffering chronic illness that life does not have to be all about the "spoon theory" and limitations.
Links of Interest & More
- The Mastocytosis Society
- Mast Cell Disorders Forum
- Dr. Castells - My main Masto Dr.
- Patient Info
- My Mastocytosis Facebook Page
- National Organization of Rare Disorders - Mastocytosis
- Dr. T.C. Theoharides
- Kevin's Masto Blog
- Another Masto Blog - Great Links
- A Chronic Dose - A Chronic Ilness Blog
- Chronic Babe
- Low Histamine Diet - I Follow This
- Google Results on Mastocytosis
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3 comments:
You're an inspiration!
For Many Peoples Mastocytosis Is a Mystry as this disease is not so common, Very Rare. But people who suffer from such disease must set a Example for those who dealing with it and you have done that...Cheers!!!
Mastocytosis is a difficult one to discuss only because it is a simple yet complicated rare disease. Basically it is when the body produces to many Mast Cells (key part of the immune system) excessive cells. There are two types of Mastocytosis Cutaneous (skin) or urticaria pigmentosa, which affects the outer skin and systemic which affects the inner workings of the body. For more info
Go To
http://www.fuelthemind.com/health/health/mastocytosis_disease.html
Diagnosing Mastocytosis : your doctor can determine if you have cutaneous (skin) Mastocytosis after inspecting the skin, the may see the appearance of too many mast cells and do a biopsy to confirm any suspicions. Systemic Mastocystosis can be determined a few ways, through bone scanning, bone marrow testing, blood-work and also through urine. The high amount of the fore mentioned chemicals in the blood or urine is a way doctors can determine if you have the systemic type of this disease.
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