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 Posted: Mon Oct 22, 2018 4:41 pm
Moyamoya? Isn't that a type of Fish? [b]Aria Starstone[/b]| 1, 3, 2 SEMI CUSTOM INFO Semi-Custom Sex preference: Female Likes (Max of Ten): Fluff, Rainbows, Pastels, Heterochromia, white/black/red combos, crystals, feathers Dislikes (Max of Ten): Blood, Gore, Overly bright contrasting colors Quote: Delete this entire quote if you're not using any imagesOptional: Three inspirational images Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: A Japanese word. What disease/illness/syndrome has affected your family the most? : Depression, in it's various forms. Mental Illness, as a whole, would be the biggest issue for my blood relatives. What is an Orphan Disease?:Any disease that, for financial reasons, the pharma-industry chooses not the pursue the research of cures and/or medical aids for, because they either do not have a significant enough statistical population to make it 'worth it' to the industry, or it occurs primarily in developing countries, which would, once again, make it financially 'not worth it.'
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Posted: Mon Oct 22, 2018 4:51 pm
Moyamoya? Isn't that a type of Fish? [b]Username[/b] Tara de Draiocht | 1,2,3 SEMI CUSTOM INFO Semi-Custom Sex preference: CC Likes (Max of Ten):- canines - galaxy - felines - sci-fi - mythology - Shamanistic - lanterns - space technology - floof - ancient symbols Dislikes (Max of Ten):- gore - tentacles - bugs - flutters - super bright colours (aka neon) - aquatics - usdias - clowns - short hair - bald Quote: Delete this entire quote if you're not using any imagesOptional: Three inspirational images Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: I honestly couldnt tell you because sometimes things mean the complete opposite of how they are named. What disease/illness/syndrome has affected your family the most? : I have Poly-cystic Ovarian syndrome and my mom has Celiac Disease (highly allergic to wheat!) What is an Orphan Disease?: An orphan disease is a rare disease or condition that affects fewer than 200,000 people in the United States. Orphan diseases are often serious or life threatening Quote: Delete this entire quote if you're not going for the extra ticketOPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name:Celiac DiseaseHow rare is it?: Celiac disease affects 1% of healthy, average Americans. That means at least 3 million people in our country are living with celiac disease—97% of them are undiagnosed. Type 1 Diabetes affects 3 million people; 6% (180,000) of those diagnosed also have celiac disease. Summarize what it's like: Celiac disease (gluten-sensitive enteropathy), sometimes called sprue or coeliac, is an immune reaction to eating gluten, a protein found in wheat, barley and rye.
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Posted: Mon Oct 22, 2018 5:05 pm
Moyamoya? Isn't that a type of Fish? [b]Ebonrune[/b]| 1, 3, 2 SEMI CUSTOM INFO Semi-Custom Sex preference: Male Likes (Max of Ten): Dark wolf patterns, stripes, foxes, FLUFF Dislikes (Max of Ten): Pink, gore Quote: Delete this entire quote if you're not using any imagesOptional: Three inspirational images Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: If I was completely ignorant about it, I would assume it was some variety of pufferfish or enemy of Godzilla. What disease/illness/syndrome has affected your family the most? : It's about equal between stroke and cancer. What is an Orphan Disease?: In short, it's a disease that is somewhat rare, averaging around or less than 200,000 people in a nation. As such it can be hard to diagnose one because it isn't as well known as others. Quote: Delete this entire quote if you're not going for the extra ticketOPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name:Spranger Schinzel Myers syndromeHow rare is it?: Very rare Summarize what it's like:Symptoms of Spranger Schinzel Myers syndrome * Underdeveloped digits * Small head * Hydrocephaly * Arthrogryposis * Underdeveloped lowest portion of spine (sacrum) * Permanent joint contractures
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Posted: Mon Oct 22, 2018 5:13 pm
Moyamoya? Isn't that a type of Fish? [b]Calixita[/b]| 1, 2, 3 SEMI CUSTOM INFO Semi-Custom Sex preference: Male Likes (Max of Ten):Mayan/Aztec themes
Día de Muertos themes
Sumi-e style and themes
Elemental themes
Totem/tribal themes
Skeletal markings
Bones/skulls + flowers
Piebald galaxy
Cat markings
Browns/naturals with bright rainbow markings Dislikes (Max of Ten):Bugs/spiders/insects
Pus/boils/growths
Veins and vein-like things (such as vines going in and out of the body)
Extreme gore/inner organs hanging out
Clusters of holes
Round/bulging eyeballs Quote: Optional: Three inspirational images Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: A condiment. At first glance it looked like it said mayonnaise to me. I knew this was wrong in the context it was used, but it was my first thought. What disease/illness/syndrome has affected your family the most?: Depression What is an Orphan Disease?: The exact definition varies in different regions around the world. In the USA, an orphan disease is a very rare condition that only affects less than 200,000 people in America. In Japan, orphan diseases are defined by affecting less than 50,000 patients in Japan. Quote: OPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name: MethemoglobinemiaHow rare is it?: I couldn't find any exact numbers; only that it is considered one of the rarest diseases in the world and only "a few" cases have been reported. Summarize what it's like: Generally, this disease causes dizziness, headaches, fatigue, shortness of breath, blue or purple tinted skin (cyanosis), inability or low-ability to perform basic exercises, and loss of the hairline. In severe cases, however, it can cause seizures, coma, and even death. Methemoglobinemia is caused by high levels of methemoglobin (a type of iron) in the blood, which results in too little oxygen being delivered to the cells throughout the body. People with this disease may have chronic cyanosis, but all other symptoms can be treated. CONGRATULATIONS on being one year stroke-free! So glad to hear how much better you're doing. Thank you for sharing your celebration with us!
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Posted: Mon Oct 22, 2018 5:38 pm
Moyamoya? Isn't that a type of Fish? [b]SwordOfTheDarkOnes[/b]| 2.1.3 SEMI CUSTOM INFO Semi-Custom Sex preference: Male Likes (Max of Ten): Bone Accents, Fluff, Multi-Eyes, Multi-Mouths, Rainbow, Cool Colors, Galaxy, Space, Glow Effects, Multi-tails Dislikes (Max of Ten): Neon Pink, Frilly things, Gore, Exposed Organs Quote: Delete this entire quote if you're not using any imagesOptional: Three inspirational images Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: Honestly, a fish or some sort of food dish. It sounds like a super bittersweet sort of desert dish, like the 'Moya" is said with a pucker....I'm weird. What disease/illness/syndrome has affected your family the most? : Diabetes What is an Orphan Disease?: A illness that affects less that 200,000 people in the world. Also, called Rare Disease. Quote: Delete this entire quote if you're not going for the extra ticketOPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name:ZaspopathyHow rare is it?: Seems pretty rare, only found back in 2005. Summarize what it's like: Its a branch off of progressive muscular dystrophy. It encompasses multiple forms of both distal and proximal myopathies. Its caused by a mutation in the ZASP gene. It, like all diseases in this particular family, weakens your muscles and generally make life far more difficult. It gives you difficulty speaking, breathing, walking...its all around a jerk.
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Posted: Mon Oct 22, 2018 5:53 pm
Moyamoya? Isn't that a type of Fish? [b]Fuzzy Gumdrop[/b]| 1, 3, 2 SEMI CUSTOM INFO Semi-Custom Sex preference: Female Likes (Max of Ten):1. Starry swirls 2. Day of the Dead 3. Pastels 4. Piebald nautral colors 5. Piebald unnatural colors 6. Antlers 7. Wings 8. India Silk patterns 9. Sumi-E 10. Skulls Dislikes (Max of Ten):1. Clowns 2. Lots of neon 3. Bald Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: I thought it was the Mola Mola, sunfish What disease/illness/syndrome has affected your family the most? : Dementia What is an Orphan Disease?: A diease that effects a small percentage of the population and doesnt financially interest the pharmacital companies so they dont put as much effort into curing/preventing it. Quote: Delete this entire quote if you're not going for the extra ticketOPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name:ABCD SyndromeHow rare is it?: About one in 450,000 Summarize what it's like: The syndrome’s name is an acronym for the main symptoms of the condition, which are albinism, black area of hair (lock), cell migration disorder of the neurocytes of the gut (intestinal dysfunction), and deafness (complete hearing loss). This can mean people with the diease can skin/hair lighter then their parents/siblings, sensitivity to light and involuntary rapid movement of the eyes, poor nutrition and abnormal bowel movements
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Posted: Mon Oct 22, 2018 5:58 pm
Moyamoya? Isn't that a type of Fish? [b]one over three[/b]| 3,1,2 SEMI CUSTOM INFO Semi-Custom Sex preference: Male Likes (Max of Ten): leg down males Dislikes (Max of Ten): UFOs/Aliens(greys) Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: Mindsend. ;p What disease/illness/syndrome has affected your family the most? : Various mental illnesses. What is an Orphan Disease?: A rare disease that has very rare and thus often has limited study in how to treat it. Companies often don't want to produce drugs to treat it because of their low profits. Quote: Delete this entire quote if you're not going for the extra ticketOPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name:Hereditary Diffuse Gastric CancerHow rare is it?: Unknown. It's caused by a faulty gene which can be inherited from 1 parent. Children have a 50-50 chance of inheriting it they only developed tests for it in the last 5 years. Summarize what it's like: You have no idea you have it until one day you have stomach cancer. Stomach cancer is nearly to impossible to detect early and once it's detectable it's almost certainly a death sentence. Having the gene increases your chance of developing stomach cancer within your lifetime to 70-80%. | Recently tests were developed to check for the gene, enabling parents to do invitro-fertilization if they know they have a chance to pass it on. Due to this there's a movement to stop the gene before it can pass on to the next generation. If you do have the gene your choice becomes either wait and hope you don't develop the cancer, or undergo risky surgery to remove your stomach. For anyone who is intrested in life without a stomach please check out No Stomach for Cancer.
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Posted: Mon Oct 22, 2018 6:00 pm
Moyamoya? Isn't that a type of Fish? [b]Revolutionary Roniel[/b]| 1, 3, 2 SEMI CUSTOM INFO Semi-Custom Sex preference: Likes (Max of Ten):- Sled huskies - Favorite husky colors: Grey, light red, copper, silver and white, splash coat (based on this site) - Subtle integrated tribal markings like my gator twins have - Custom facial expressions that show personality - Multiple tails - Carousel Dislikes (Max of Ten):- Draft/warhorse - Neon colors - Gore/grossness - Goofy stuff Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: I know from talking to you, that it is diagnosed with a smoky pattern in the blood vessels of the brain, and can cause microstrokes! Also, I know that it is rare, and thus hard to diagnose and hard to find someone who knows how to treat it. What disease/illness/syndrome has affected your family the most? : Probably various cancers... What is an Orphan Disease?: The FDA defines is as a disease that affects less than 200,000 in the United States OPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name:AcromegalyHow rare is it?: It affects about 6 per 100,000 people Summarize what it's like: Acromegaly is when the bones keep growing after growth plates have closed. Bones increase in size, especially in the hands, face, and feet. Changes occur so gradually, that it can take a long time to diagnose. As acromegaly progresses, it can cause high blood pressure, enlargement of the heart, compression of the spinal cord, loss of vision, and sleep apnea. If untreated, people with acromegaly will usually have premature death.
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Posted: Mon Oct 22, 2018 6:05 pm
Void Moyamoya? Isn't that a type of Fish?
[code ] Username| preferencenumbers [/ code]
SEMI CUSTOM INFO
Semi-Custom Sex preference:
Likes (Max of Ten):
Korea themed
Japan themed
Sumi E
Punk
Steampunk
Fluffy
Neon glowing
Halloween themed
K-pop
Cheshire cats
Dislikes (Max of Ten):
Gore
Clashing colors
bald
Quote: Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: Mona..Morgana from persona 5
What disease/illness/syndrome has affected your family the most? : N/A
What is an Orphan Disease?: any disease that affects a small percentage of the population
Quote: OPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name:CRPS1How rare is it?: There are several types of this disease just CRPS is not uncommon but type 1 and type 2 are hard to find data for. Summarize what it's like:
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Posted: Mon Oct 22, 2018 6:10 pm
Moyamoya? Isn't that a type of Fish?
[b]Leena-chan[/b]| 1, 2, 3
SEMI CUSTOM INFO Semi-Custom Sex preference: Male Likes (Max of Ten): Floof, Blues, Black, Silver, Flowy, space stuff, Mane / Tail for days, Gothic, Big Cat Patterns Dislikes (Max of Ten): Insects / Bugs, Pink, Minis, Spiders,
Quote: Delete this entire quote if you're not using any imagesOptional: Three inspirational images Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: The thing that Mind face and go through so much testing about. It effects major organs, and was discovered in Japan. Its super difficult to treat and even harder to diagnose in time but that’s all I know. What disease/illness/syndrome has affected your family the most? : Cancer & Brain diseases (Alzheimers, Dementia, Strokes, etc.) What is an Orphan Disease?: An orphan disease is a rare disease very few people have heard of or know about, that goes without funding for treatment, and there are very few and far between treatments even available for these. Quote: Delete this entire quote if you're not going for the extra ticket
OPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there
Disease Name:Hashimoto's encephalopathyHow rare is it?: It is considered rare, but the exact figure is unknown as the suspect is that it is possibly more common but goes undiagnosed most of the time. Summarize what it's like: It varies from person to person but the general symptoms are onset of confusion coupled with troubles with consciousness, seizures, personality changes, cognitive issues, and muscle tremors / convulsions. Psychosis, dementia, and paralysis has also been reported with it and even headaches and coma. Its so uncommon that the exact cause is unknown but there is a theory of it being an autoimmune disorder similar to Hashimoto’s Thyroiditis or to possibly be linked to it. Most people can treat it with immunosuppressive therapies or steroids.
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Posted: Mon Oct 22, 2018 6:12 pm
oops you need to repost: you didn't fill in the [ code ] area for me to enter you with Yeonn Moyamoya? Isn't that a type of Fish? [code ] Username| preferencenumbers [/ code] SEMI CUSTOM INFO Semi-Custom Sex preference:Likes (Max of Ten):Korea themed Japan themed Sumi E Punk Steampunk Fluffy Neon glowing Halloween themed K-pop Cheshire cats Dislikes (Max of Ten):Gore Clashing colors bald Quote: Optional: Three inspirational images Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: Mona..Morgana from persona 5 What disease/illness/syndrome has affected your family the most? : N/A What is an Orphan Disease?: any disease that affects a small percentage of the population Quote: OPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name:CRPS1How rare is it?: There are several types of this disease just CRPS is not uncommon but type 1 and type 2 are hard to find data for. Summarize what it's like: Causes pain that is not associated to any event. Symptoms can show up up to a month later after injury making it very hard to pinpoint. People who have type 2 often rate pain at least a 40 out of a 50 point scale.
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Posted: Mon Oct 22, 2018 6:16 pm
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Posted: Mon Oct 22, 2018 6:17 pm
Moyamoya? Isn't that a type of Fish? [b]mistalina13[/b]| 1, 3, 2 SEMI CUSTOM INFO Semi-Custom Sex preference: CC Likes (Max of Ten):1. Accessories for storytelling pieces. 2. Natural animal patterns. 3. Natural animal colorations. 4. Bleps. 5. 6. 7. 8. 9. 10. Dislikes (Max of Ten):1. Large amounts of gore. (Blood is okay as are bones.) 2. Zombies. Quote: Delete this entire quote if you're not using any imagesOptional: Three inspirational images Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: Like most my first thought was some manner of tropical fish. What disease/illness/syndrome has affected your family the most? : Different types of cancer. Keratoconus. Depression. Anxiety. Chronic Sinusitus. Asthma. Apparently I was prone to ear infections as a child??? What is an Orphan Disease?: A diease that effects a very small amount of people in an country or region. (I believe in the US the number is less than 200,000?) Quote: Delete this entire quote if you're not going for the extra ticketOPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name:OsteocondromaHow rare is it?: The only number I could find is 3% of the general population and represent 35% of all benign tumors and 8% of all bone tumors. (Wikipedia) Summarize what it's like: It's an overgrowth of cartilage or bone usually near the end of a bone at a growth plate. Most often it shows up in legs, pelvis or shoulders during adolescence. Commonly it's genetically inherited and apparently there is another variant that is not. While it can turn into cancer in most cases it doesn't. Mine is next to my femur above my right knee. It's genetically inherited. I never knew it was there until my Mom had comparative xrays done of my knees after I dislocated my left one.
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Posted: Mon Oct 22, 2018 6:19 pm
Moyamoya? Isn't that a type of Fish? [b]Yeonn[/b]|1,2,3 SEMI CUSTOM INFO Semi-Custom Sex preference: Female Likes (Max of Ten):Korea themed Japan themed Sumi E Punk Steampunk Fluffy Neon glowing Halloween themed K-pop Cheshire cats Dislikes (Max of Ten):Gore Clashing colors bald Quote: Optional: Three inspirational images Questionaire Without looking it up, what comes to mind when you hear "Moyamoya"?: Mona..Morgana from persona 5 What disease/illness/syndrome has affected your family the most? : N/A What is an Orphan Disease?: any disease that affects a small percentage of the population Quote: OPTIONAL FOR BONUS TICKET
Educate me on one of the Orphan Diseases out there Disease Name:CRPS1How rare is it?: There are several types of this disease just CRPS is not uncommon but type 1 and type 2 are hard to find data for. Summarize what it's like: Causes pain that is not associated to any event. Symptoms can show up up to a month later after injury making it very hard to pinpoint. People who have type 2 often rate pain at least a 40 out of a 50 point scale.
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Posted: Mon Oct 22, 2018 6:33 pm
Void this I'll enter again my freaking signature decided to add itself even though I said no.
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