About Alternating Hemiplegia of Childhood…

What is Alternating Hemiplegia of Childhood (AHC)? AHC is a rare neurological disorder in which repeated, transient attacks of hemiplegia occur, affecting one side of the body or the other, or both sides of the body. The hemiplegia (paralysis of a portion of the body) ranges from simple numbness in an extremity to full loss of feeling and movement. The attacks may last for minutes, hours or even days and are normally relieved by sleep. The attacks of hemiplegia may alternate from one side of the body to another.

What other symptoms are associated with AHC? Children with AHC have exhibited a wide range of symptoms in addition to AHC. These include tonic attacks (lack of muscle tone), dystonic posturing (stiffening of extremities), nystagmus and other oculomotor abnormalities (eye disorders), developmental delays, mental retardation and seizures. Not all children suffer from all of these associated symptoms and there is no current evidence to prove that these symptoms are associated with, or caused by, AHC.

What causes a hemiplegic episode? The causes of hemiplegic attacks differ among children. High stress activities have been know to cause attacks as well as the presence of a cold or upper respiratory problems. Children are affected by bright lights, wind, temperature changes and exposure to water. Many attacks occur for no apparent reason.

Will a child „grow out of“ AHC? Although the name AHC contains „of childhood“ in it, there is no evidence to suggest that a child will be cured simply as they age. Many children exhibit a greater degree of ability to handle the attacks or even avoid factors that cause the attacks as they age, but this is not always the case.

What are the long term effects of AHC? At this time, AHC would still be considered a „new“ disorder due to its relatively recent diagnosis. There is no proof that the disease is fatal or shortens life expectancy is any way, but sufficient documentation is not available at this time. There is developing evidence that AHC may cause ongoing mental and neurological deficits with a progressive course.

What causes AHC and is there a cure? The cause(s) of AHC is unknown and there is no known cure for the disorder.

Are there any current treatments for AHC? The drug Flunarizine (trade name Sibelium) has been used successfully in many cases to lessen the effects of AHC. Other drugs that induce sleep have also been used to reduce the severity and length of attacks. Because the effects of AHC are thought to be cumulative in relation to damage to the brain, reducing the severity of attacks may have significant positive long term benefits.

How is AHC diagnosed? Many children are initially diagnosed with epilepsy or other seizure disorders and prescribed anticonvulsent medications. While some do suffer from seizures, the use of these drugs are generally unwarranted and produce no benefit. It is unknown how many children are currently misdiagnosed. To properly diagnose AHC, other similar disorders are ruled out. These include vascular disorders, migraines, cerebral emboli, blood dyscrasia, metabolic disorders (such as aminoacidopathies), and mitochondrial disorders (such as MELAS syndrome). Unfortunately, diagnosed can not be accomplished through a single test.

Ómetanlegur stuðningur

Stuðningurinn sem AHC samtökin fengu í Reykjavíkurmaraþoninu var ómetanlegur og langt umfram okkar björtustu vonum.
Við vorum með 23 frábæra hlaupara sem hægt er að sjá hér:

http://hlaupastyrkur.is/godgerdafelog/nanar/4872/ahc-samtokin-a-islandi–ahc-association-of-iceland

Okkur langar að þakka hlaupurunum okkar og öllum sem hétu á þá innilega fyrir stuðninginn.

Hérna er nokkrar myndir frá hlaupinu:

10km hlauparar ásamt stuðningsliði, Fríða þjálfari (lengst til vinstri) átti að eiga þennan dag, Sara (fyrir miðju)keppti í Latabæjarhlaupi og Þórdís (næstlengst til hægri) hélt uppá 62 ára afmælið sitt þennan dag.

Í alla staði frábær dagur

þeir sem hlupu 10km

Gunnar, Bjarni og Sigurður

Ragnheiður, Viktor Snær, Sunna Valdís og Sigurður

Ævar og BarbaraÆvar og Barbara

Flottar stelpur

10km hlauparar

AHC foundation won at Chase community giving

Chase bank was giving donations to 200 charities. AHC foundation in the states was one of the 200. This is very good news for the foundation and all the AHC patients. Beside the fact that the money will come handy it also raises awareness of AHC and could lead to more funding hopefully.
http://apps.facebook.com/chasecommunitygiving/charities/383225425-alternating-hemiplegia-of-childhood-foundation-inc?src=charity-details-wall-post-self&ref=mf

AHCAI joining the Reykjavik marathon

The Reykjavik marathon will be held on the 21st of August 2010. You can sponsor a runner for a certain amount for each kilometer that he runs and the amount will then go to a charity of your choice. AHC association of Iceland is among the charities you can choose. More information on:
http://www.marathon.is/godgerdamal/godgerdafelog

Charity necklace

We have now started to sell the 50kr necklace. I took some with me to a conference in Punta Cana, Dominican Republic, and sold them all. Everyone loves them. They are ideal as a gift or just for yourself;)