Why refer to it as the “Childhood Alzheimer’s”?

You possibly can recall someone you knew that suffered from Alzheimer’s disease. Currently 5.3 million Americans are living with this progressive and fatal brain disease with no cure (www.Alz.org). Alzheimer’s is progressively devastating in how it destroys brain cells, causes loss of memory (progressive dementia), and problems with intellectual functions that affect many of the things you and I take for granted. Alzheimer’s is the seventh leading cause of death in the United States (www.Alz.org).

In comparison to Niemann-Pick Type C Disease (NPC), it has maybe less than a 100 people currently living in the U nited States. Many sources state that 500 cases have been diagnosed ever worldwide. That’s not exactly as common of disease as Alzheimer’s.  NPC is described as a genetic degenerative neurological  disorder that mostly strikes during childhood that stores fatty lipids in the brain, liver, spleen, and bone marrow because of the cells inability to metabolize cholesterol. Although uncommon, adult onset can take place with NPC. Outcome is also fatal with no cure.

Whether it is Niemann-Pick Type C Disease (NPC) or Alzheimer’s, they are extremely saddening to experience as a loved one. One affects mostly older adults and the other strikes predominantly in adolescents. Regardless, a main symptom in each disease is progressive Dementia along with similar pathological features that include the loss of intellectual function.

The question seems to arise often regarding why would you refer to Niemann-Pick Type C Disease (NPC) as the “Childhood Alzheimer’s” when they are technically two separate diseases? Touche’, great point Dr. Watson. My wife Jennifer absolutely hates when the two are referred to one another. I on the other hand am absolutely fine with the comparison and title.

When you tell someone about NPC, they kind of give you that “deer in the headlights” look along with the “side head nod” like a puppy. For any of you in sales or marketing the first thing you are taught is to make an impact statement to gain attention or some type of understanding of what your speaking about. When you say the “Childhood Alzheimer’s” people can instantly relate to someone or to a situation where they’ve heard about Alzheimer’s or Dementia.

Overall if you explain in a way that they are two separate diseases that share some similarities, you should be able to paint a mental picture for your audience. In no way do I feel by using this reference that it confuses nor threatens anyone. Just explaining what NPC is, is confusing enough. How can you make it any more confusing for people? Seriously.

You as a parent are the biggest advocate for your children. We need to let people know about this horrible disease. I believe it holds keys to other diseases affected by the storage of cholesterol in cells. Please visit our website www.NPCFund.org or my family’s personal page www.BriParDun.com.

Today, there is no cure or effective treatment

Thank you for stopping by! Niemann-Pick Type C Disease is a every day reality for our two eldest sons’ Brisan and Parker including our whole family. Their prognosis captures the meaning of Niemann-Pick Disease Type C (NPC). It’s a genetic neurological disease that strikes children through accumulation of cholesterol and other excess fats in the cells of the liver, spleen, and brain. When brain cell function is blocked, the child loses coordination, stumbles, falls, and eventually will need a wheelchair, hospital bed, and other adaptive equipment. As the disease worsens, other devastating symptoms develop, including loss of the ability to speak and swallow, and seizures may occur. The health of children with NPC declines until ultimately, the disease claims his or her life. This disease affects roughly a 75 people in the US and around 500 worldwide (ever). The NPCF was formed to help create a entity that we could bring to communities that surround us the awareness needed to shed light on a disease that researchers are taking interest in. We felt after facing this reality that research has a different time line than parents yet they are making progress then why could we not help out in some shape, way or form?

Today, there is no cure or effective treatment for Niemann-Pick, but research is making progress. Tomorrow through research made possible by the financial support of generous contributors, these precious children can be saved and hopefully our Brisan and Parker! But they need your help now. This disease once solved or partially will provide a gateway into other storage disorders and it’s relation to Alzheimer’s, atherosclerosis, HIV/Aids, and stroke.

The other ugly truth that we face as their parents is the disease is always fatal at the time I write this. Can you imagine the brutal honesty of the this whole situation?  Pretty surreal at times… can someone pinch us? We were told at the appointment of the official diagnoses on 8/8/08 that we should take them home and love them the best way we can in the mean time.

We encourage you to cherish ever moment with your family and don’t take for granted the intuitions you may have. The NPCF will need your support to make a  bigger impact! If you have any ideas or collaborations please reach out to us.

Sincerely,

Michael & Jennifer Stults