Hailey Hailey Disease

Question: Will there ever be a cure for Hailey-Hailey Disease?

Answer: Obviously there would be cure for ir one day, we have cure for many life threatining diseases. And still we are fighting for cure for many dideases. And ONE DAY we can expect the world to be free of diseases. and sure this may happen given the fact the pace of advancement of science especially with biotechnology. So ray is the hope of life. so keep faith on science.

Question: Hailey Hailey Disease? Does anyone else out here in this world suffer from it please help Please dont answer if you never heard of it its a rare disease

Answer: sufferers of HHD have a problem with keratinocyte adhesion. Keratinocytes are the cells that make up the skin and in HHD patients one of the thousands of genes controlling this cell doesn't work properly. The result is that the keratinocytes do not stick to each other as well as they should and the skin is therefore weaker. 'a rare autosomal dominant' All this means is that the gene that causes HHD is on one of the 22 pairs of human chromosomes (called autosomes) that are not the sex (X and Y) chromosomes. 'rare' refers to the frequency of the HHD gene in the human population - it is uncommon, perhaps 1 in 1,000,000. The 'dominant' bit is about the fact that humans have two copies of each chromosome (one from the mother and one from the father). This means that every gene has a back up gene on the other chromosome and that these two copies of a gene interact to decide how they will be expressed in the person. If one of the genes is so powerful that it doesn't matter if the other copy is a good copy or not - then it is said to be dominant. It is beginning to be believed, however, that in HHD, half of the protein SPCA1 (ATP2C1) is made correctly, based on the good gene and half is made incorrectly. Thus, we function OK in most cases. genodermatosis means 'an inherited skin disease' Translated: Hailey Hailey disease is an infrequently encountered inherited skin disease. The defective gene is carried on an autosomal chromosome [not on one of the sex (X and Y) chromosomes] and is dominant. Children of parents where one parent has HHD have a 50% (1 in 2) chance of inheriting the disorder. For patients with the disease the major cells of the skin (keratinocytes) do not stick to each other properly.

Question: Question for "right to die" proponants? I just read this very sad story about a 5 year old girl named Hailey with "Late Infantile Batten Disease." According to the article, "The disease causes seizures, dementia, and blindness. Most sufferers don’t make it beyond the age of 12. Hailey can no longer walk, talk or eat without a feeding tube." My very serious question is, if you supported the decision to pull the feeding tube from Terry Schivo, at what point do you feel Hailey's tube should be pulled. Do you feel differently because she is a child, a minor, what sort of things do you consider when forming an opinion. Also if her parents differed in their opinions as to her future of being kept on eternal life support or having the tube removed, which parent would you side with? I'm asking this as a respectful question because I really want to know how people decide on these things, so please don't report. Thanks Here's a link to the article: http://www.foxnews.com/story/0,2933,3736…

Answer: On one hand, I wouldn't want to watch my child go through that, but on the other, I would be afraid that as soon as I pulled the plug I'd get the news that they had found a cure. I'd be very torn. I don't think the media has any place in this decision. I think it should be between the parents. If the parents can't agree, they should be sent to a mediator to come to an agreement.

Question: How does my story sound for a beginning? I awoke to the sound of graceful humming with a hint of sadness. My eyes were still asleep but my hearing was a hundred percent awake. “ Madame?� I questioned with my voice still scratchy. “ Yes, Jessie. I’m just getting my last look around before I set off.� Madame Mc Hailey’s words flooded with sorrow. I had almost forgotten that my most favored maid I’ve ever known was leaving. And this time, she was serious. I finally retrieved my eyesight when I saw Madame Mc Hailey pull up my smooth leather chair from my desk to the side of my bed and sat her slim self on it and stared at me. She kept her distance as if I had some kind of contagious disease. Then she started to smile. “ I remember the days when I was changing your diapers, and the time when I took you to the doctors for the first time. You put up such a racket!� She paused and gazed at the blue sealing of my room. “ You know, I never thought that I would see you grow from a month old to 16 years.� “ Yea.� Her words were now starting to make contact with my emotions. “ Why do you have to leave? And why won’t you tell me why?� “ I’m not supposed to talk about it. But,� she quickly got that last word in just when she saw me open my mouth,� I really wish I could tell you.� “C’mon, mom!� I quickly realized my mistake and put my hand over my mouth. I knew that Madame Mc Hailey understood what just happened. After all, she couldn’t blame me for not having a mom. She knew that I had always thought of her as one, which is the main reason she didn’t want to leave. She lifted her hand to catch the first dropping of salty tears. It felt as if she wanted me to get emotional, too. My brother’s voice echoed through the hallway, alerting Madame Mc Hailey that her taxi was here. I slowly rose from my bed and gave Madame Mc Hailey a long, firm hug. “ Be good.� She whispered. Without a warning, she pulled out from me turned around, and quickly left. Something kept telling me that this was my dad’s plan, that he wanted Madame Mc Hailey out of the house. I paced all about my empty room, wondering and tracing everything that happened to me back to him. I’m not blaming him for all of this because I hate him, but everything that happened in the past was his fault. For example, when he took me out of school, in kindergarten after I started to make friends, that left me crying for months. And when he moved my brother and I across the United States, after we made friends in our neighborhood. His excuse was “ they’re bad people in the world, and the friends you guys were making was one of those people.� Give me a break! The aroma of bacon hit me while I was in thought and it sent me downstairs to the kitchen, asking for more. I entered the kitchen and saw Randle leaning over the cooking top checking his egg omelet and bacon. Randle is my older brother, but something about him just freaks me out. He’s always full of hatred and secrets. He hates my guts, hates your guts, and he could care less if the world was going to end. But some how, I always say he’s my big bro, and that’s what they do. And the weirdest thing is that you could never catch him after 9 o’clock. He’s never around at that exact time. At 8:59, you see him walking towards his room and slam the door shut. And then at 9 o’clock P.M. on the dot, you could walk into his room and not find a soul in there. “You better back up before you burn yourself.� I worried. “ I don’t care, and mind your business.� he replied in a low, unpleasant voice. But I knew he’d say something like that, so I continued. “ What’s your problem?� I asked.� Everyday, I get the same harsh talk from you. “ You want to know my problem?� he breathed.� My life.� He was now chopping red and green peppers for his omelets, which made me real nervous and gave me thoughts about what he, could do with the knife. But instead, he chopped the peppers like a professional chef. His hands swiftly moved in a rhythm-like motion while he diced. I changed the subject. “How do you do that so well? Your like a pro!� I stared at his now still hands to find that he was staring back at me, blankly. “Shut up.� Tell me how it sounds. By the way, I;m only 12.

Answer: Two major turn-offs : HUGE wall of text. Break it up into paragraphs. First two sentences are cliche, and don't make sense. Your hearing is ...awake? Edit before you post . Your age is completely irrelevant .

Question: Is this true? I have Celiac Disease (I'm allergic to wheat, barley, oats, and rye.) I've heard that if I were to continue to eat wheat and gluten products, that it would raise my lower my chances to have babies, and increase my chances of getting stomach cancer. Is this true? Or are they just trying to scare me? I know that my Celiac has caused me to develop kyphoscoliosis, but can it really have an effect on my fertility and cause me to develop stomach cancer? Any help would be greatly appreciated!! Thanks so much!!! *~*~hailey~*~*

Answer: I hope you are under the care of a responsible physician, hopefully a board certified gastroenterologist. There is a lot of myth-information about celiac disease on the internet. It is both over-diagnosed by those who fail to observe the accepted criteria and under-diagnosed by those who fail to think of it. It is also a favorite disease of persons with Munchhausen syndrome and Munchhausen by proxy. Fertility issues with celiac disease are complex and incompletely understood. Persons with celiac disease are more prone to lymphoma and certain cancers of the gastro-intestinal tract. I am not an expert on the disease, and I am aware of the associated osteoporosis, but is the relationship between celiac disease and scoliosis real?

Question: Another Celiac Question =)? I have had Celiac Disease since I was 1 year old. I was recently reading an article about it and it said that people with Celiac sometimes can have poor growth, but if you go on the gluten-free diet, you could catch up on your growth. So maybe that's why I'm so short? (I'm 5 foot 4 inches and I'm 15) My parents are fairly tall (my mom's 5 foot 8 inches, and my dad is 6 foot 3 inches) So hopefully if I start this gluten-free diet, do you think i will go through a growth spurt? Thanks a bunch everyone!! *~*~hailey~*~* It's very challenging to stay on the gluten-free diet... especially when no one else in your family has Celiac. And my mom gets pretty frustrated when she has to cook two meals for the family, one for my dad and brother, and a special gluten-free meal for me. Is there anything that I could do that would enable me to stay on the gluten-free diet?

Answer: No, I don't think this is true. Celiac doesn't generally make you short.. Maybe you are supposed to be that height. Or you could still have a growth spurt. I didn't finish growing until I was about 17. you should already be on a gluten free diet, though. You will continually be malnourished if you aren't.

Question: OK..this is sad and i don't know how to deal with it..? my little cousin has a disease..(when he was born his head was large and that is because that is as big as it will ever get) he has an average life expectancy of somewhere beetween1 and 7yrs of age.. he has been in and out of hospitals for the last few months and he was in a hospital over Christmas and christmas eve. now he is in the hospital with a hole in his...(like tube in your throat where you breathe) he got this due to an ear infectin that never comleatly went away and it in fected his whole body making him more suseptibale to infections..he now has namonia and a mix of bronchitis... they think it might be the end for him soon, he is only four years old and my name is hailey but he calls me ayeeey.. and i will really miss him so i need ome emotional help for when he does pass away...btw.. im crying as i write this.! ♥♥jakey♥♥ -Hailo♥

Answer: I'm really sorry you are going through this and even more that your little cousin is going through it. I'm not sure how to counsel you in order to make you feel better but just know that God is watching over all of you and I will pray for his will to come to pass and that his purpose for your cousins life will be fullfilled. I pray for comfort for all of you and for love beyond measures. In Jesus Name Amen.

Question: would you recommend botox to treat hailey hailey disease?

Answer: i would have thought a corticosteroid ointment or a course of cyclsporan antibiotic tablets would be more helpful.............maybe a bit of gene therapy will become available one day, it should happen less often as you grow older