Thank you for visiting this blog. My name is Frances, and I am a Moyamoya patient. After completing both my surgeries, I decided to establish a blog to reach out to others in Malaysia or around the world, who may have recently received a Moyamoya diagnosis and may want to know more about this disease, or may just want to get to know someone who is going through what you're going through. I will admit that this diagnosis wasn't easy to digest, but I hope to be able to make it somewhat easier by accompanying you in your journey as you walk alongside me (by reading my blogposts). The point of this blog is to share information about this particular rare disease, and to also share my experiences and lessons learnt from this disease.
First off, what IS this thing called Moyamoya Disease?
Moyamoya Disease (MD) actually comes from a Japanese word which means "puff of smoke". This is because your MRI scans will look a little blurry or smokey, as the term suggests. Patients with MD will have their arteries itself progressively closing up on its own on both sides of the brain. This artery blockage is not caused by high cholesterol levels.
Moyamoya Disease is a very rare disease, so don't be surprised if some doctors may not know what it is. Although there are Moyamoya patients everywhere in the world, it surfaces more with Asian people (Japanese, Korean, Chinese). This disease is also found more in females as compared to males.
Researchers and doctors are still not clear what causes moyamoya disease.
What are the symptoms of Moyamoya Disease?
Because the arteries are blocking the flow of oxygen and blood in the brain, Moyamoya Disease is typically discovered after the patient has suffered a type of stroke - a Transcient Ischaemic Attack (TIA) or a hemorrhage.
A TIA is a mini stroke or a warning stroke. For TIA, the blood clot blockage is only temporary. So the symptoms of TIA occur really quickly and would only last for a short period of time. An average duration of a TIA is 1 minute. Most TIAs will not last more that 5 minutes. When a TIA is over, it usually does not cause any permanent injury to the brain.
Hemorrhage occurs when there is bleeding in the brain, which then results in a major stroke. This stroke will cause permanent injury to the brain and may affect the functioning of the mind and/or body.
Symptoms of stroke include:
- Sudden numbness or weakness of the face, arm or leg, especially on 1 side of the body
- Sudden confusion, trouble speaking or understanding
- Sudden trouble seeing in one or both eyes
- Sudden trouble walking, dizziness, lack of balance or coordination
- Sudden severe headache with no known cause
To make it easier to remember, think F.A.S.T.! When you can spot these signs of stroke, call 999 (Malaysian hotline for ambulance).
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Since MD is a progressive disease, this means that the symptoms may increase or worsen over time if no action is taken to treat it. So please do not take these stroke symptoms or the diagnosis of MD lightly.
References
American Stroke Association (2013). Spot a Stroke. Retrieved from http://www.strokeassociation.org/STROKEORG/WarningSigns/Stroke-Warning-Signs-and-Symptoms_UCM_308528_SubHomePage.jsp
Han, C., Chen, J., Goa, S. & Duan, L. (2012). Moyamoya Disease in Asia. Neurology Asia, 17, 175 - 181.