Semi-Custom Sex preference: Female Likes (Max of Ten): Galaxy, naturals, natural patterns in unnatural colors, occult imagery, exotic flowers, bones/skeletons, rainbows, pastels, basically everything? Dislikes (Max of Ten): UM....maybe kitschy stuff?
Quote:
Delete this entire quote if you're not using any images Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: Honestly, my first thought was that it was a Japanese mayo-covered snack, or something. What disease/illness/syndrome has affected your family the most? : Cancer. Most of my family has had it in some form. My sister-in-law and my niece (and two friends of mine) have been diagnosed with Multiple Sclerosis. What is an Orphan Disease?: A disease that affects less than 200,000 people nationwide.
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 Enchephalopathy How rare is it?: 2.1 out of 100,000 individuals in the general population are affected. Generally, more women than men are affected by Hashimoto's. Summarize what it's like: The most prominent symptom is impaired altered mental status, mainly affecting cognition, attention, orientation, sleep-wake cycles, and consciousness. While clear "core" symptoms have been established, those suffering from Hashimoto's may not exhibit all symptoms due to a lack of identified cases and clinical studies. Hashimoto's sufferers experience with the disease will vary case by case in severity, with some individuals seeing remissions and relapses, causing improvement or worsening, and others in a steady progression that may also include confusion, hallucinations, dementia, and impairment of the sleep-wake cycle. Additional symptoms can include seizures, fatigue, jitters or nervousness, hyperreflexia, poor appetite, cerebral ischemia, altered consciousness, and psychosis.
Posted: Mon Oct 22, 2018 1:24 pm
Moyamoya? Isn't that a type of Fish?
[b]Kitsune Mistress Nyoko[/b]| 1, 3, 2
SEMI CUSTOM INFO
Semi-Custom Sex preference: Female Likes (Max of Ten): Glowing eyes, feathers, fluffiness, crystals/gemstones, natural markings, celestial themes, asian (Japanese/Chinese/Indian/etc) themes, steampunk, frostbite, mythological creatures Dislikes (Max of Ten): Baldness without some kind of replacement mane (fins/feathers/fluff/etc), excessive use of overly bright/neon colors, muddy colors and clashing color combinations, fully clothed ponies
Quote:
Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: Well you, first of all! But also puff of smoke, since I know that's the translation of the name. What disease/illness/syndrome has affected your family the most?: Pancreatic cancer. sad My grandfather, aunt, and a cousin all developed it and eventually died from it. What is an Orphan Disease?: A condition that affects fewer than 200,000 people nationwide.
Quote:
OPTIONAL FOR BONUS TICKET Educate me on one of the Orphan Diseases out there
Disease Name:Congenital Insensitivity to Pain with Anhidrosis (CIPA) How rare is it?: Extremely (Fewer than 400 recorded cases) Summarize what it's like: Congenital Insensitivity to Pain with Anhidrosis, better known by its acronym CIPA, is a rare genetic disorder where the gene for creating the nerve cells that carry pain and temperature sensations is missing. As such, the patient is unable to feel any pain, even that from severe injury, and is also insensitive to extremes of heat and cold. CIPA patients also lack the ability to sweat.
Although the disease does not cause fatalities, CIPA patients suffer from a number of complications. Primary among these is the inability to detect the discomfort that results in most people from fever or heat stroke which is complicated by the fact that sufferers are unable to sweat to lower their body temperature. Most CIPA patients die by the age of three simply from overheating.
Those patients who survive infancy suffer from a number of other complications related to their inability to sense pain. They commonly suffer from untreated ulcerations of the lips, mouth and tongue, dental infections, minor breaks in the bones and other conditions that can lead to infection, scarring and deformities that would cause intense pain in any other person.
Kitsune Mistress Nyoko
Crew
Shameless Elocutionist
Offline
Silver Metallic Dragon
Hygienic Hunter
Offline
Posted: Mon Oct 22, 2018 1:26 pm
Moyamoya? Isn't that a type of Fish?
[b]Silver Metallic Dragon[/b]| 1,3,2
SEMI CUSTOM INFO
Semi-Custom Sex preference: Male Likes (Max of Ten): Flowers/nature, natural colors, pinks/reds, crystals/gemstones, blue/teal, moons, dream catchers, feathers, glowy Dislikes (Max of Ten): Tentacles, excessive gore, boils/skin stuff, yellow, excess mouths/teeth, minis, clowns
Quote:
Delete this entire quote if you're not using any images Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?:Being in healthcare, it sounded like a disease. But without my nurse brain on, it reminded me a some kind of tropical fish. What disease/illness/syndrome has affected your family the most? : Auto immune diseases. My grandmother and great grandmother both suffered from rheumatoid arthritis, my father and most of his family suffer from Hashimoto's Thyroiditis. I myself have several skin conditions that my doctors suspect may be caused by auto immune issues. What is an Orphan Disease?: Any disease that effects a small percentage of the population.
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:Pfeiffer Syndrome How rare is it?: 1 in 100,000 Summarize what it's like:A rare genetic condition that effects that effects bone growth and skull fusion. The bones in the skull fuse prematurely, and as a result the skull and brain do not grow correctly. It effects the bones in the hands and feet as well. It has 3 types, and most with type 1 live a normal life span. However, with type 2 and 3, severe issues with the nervous system are seen, along with large joint fusion, and severe issues with the respiratory system. Some babies are born with a 'clover leaf head' due to the extensive bone fusion. Because of the severe bone fusion, children born with the more severe types can also have severe facial deformities, fused fingers and toes, dental/jaw issues and some are even born without eye sockets or eye lids. The pictures associated are pretty hard to look at. Side note, the musical artist Prince has a son born with type 2 Pfeiffers, which is how I heard about this condition. The baby only lived about a week, and suffered all of the classic symptoms, along with much more.
Posted: Mon Oct 22, 2018 2:09 pm
Moyamoya? Isn't that a type of Fish?
[b]o-Elixir-o[/b]| 1, 2, 3
SEMI CUSTOM INFO
Semi-Custom Sex preference: Female Likes (Max of Ten): 1. Crystals 2. Occult or Wiccan 3. Sumi-E 4. Japanese Theme 5. Gothic Theme 6. Space Theme 7. Fluffy 8. Natural 9. Creepy 10. Glowing Eyes Dislikes (Max of Ten): 1. Gore 2. Holes 3. Centipedes 4. Eye Gore 6. Clown Inspired 7. Bald
Quote:
Delete this entire quote if you're not using any images Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: A japanese name xD; What disease/illness/syndrome has affected your family the most? : Diabetes, both my younger sisters have it. What is an Orphan Disease?: An orphan disease is defined as a condition that affects fewer than 200,000 people nationwide.
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:Cystic fibrosis How rare is it?:The disease occurs in 1 in 2,500 to 3,500 white newborns. Cystic fibrosis is less common in other ethnic groups, affecting about 1 in 17,000 African Americans and 1 in 31,000 Asian Americans. Summarize what it's like: A progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time
Semi-Custom Sex preference: Male Likes (Max of Ten): pastel, ghosts and spooks, dark colors with light accents, glow, natural colors, claws, wings, fluff/extra fur, pelts, blood Dislikes (Max of Ten): neon
Quote:
Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: A fish-like pokemon, or a molamola What disease/illness/syndrome has affected your family the most? : Mother had breast cancer and had to have a mastectomy, but she's been in remission since then. Just sucks that her medicine gives her boils sad But we're trying to find ways around it What is an Orphan Disease?: A disease that affects only a very small percent of people
Quote:
OPTIONAL FOR BONUS TICKET Educate me on one of the Orphan Diseases out there
Disease Name:Acro–dermato–ungual–lacrimal–tooth (ADULT) syndrome How rare is it?: The most I could find was that it had a prevalence of less than 1 in 1,000,000 Summarize what it's like: ADULT syndrome features include ectrodactyly, syndactyly, excessive freckling, lacrimal duct anomalies, dysplastic nails, hypodontia, hypoplastic breasts and nipples, hypotrichosis, hypohidrosis, broad nasal bridge, midfacial hypoplasia, exfoliative dermatitis, and xerosis. Essentially a lot of anomalies found in the skin/tear duct/teeth/fingernails and hair loss.
Posted: Mon Oct 22, 2018 2:37 pm
Moyamoya? Isn't that a type of Fish?
[b]Antidia[/b]| 1,3,2
SEMI CUSTOM INFO
Semi-Custom Sex preference: female Likes (Max of Ten): butterflies, fairies, pink, pastel rainbow, birds, fox, cat/wolf markings, husky, gold Dislikes (Max of Ten): gore, bald, clowns
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: a type of dog What disease/illness/syndrome has affected your family the most? : Cancer. What is an Orphan Disease?: a disease that affects less than 1 per 200,000 people in the US
OPTIONAL FOR BONUS TICKET Educate me on one of the Orphan Diseases out there
Disease Name:Glomus Juglar Tumor How rare is it?:1 in 1,300,000 Summarize what it's like: It is so rare, there isn't an IDC code for it, so doctors list it as a Jugular Paraganglioma. I was diagnosed in 2013 with it. It is a rare tumor that started in my ear, grew down my neck to the back of my head and into my brain. Symptoms are similar to a stroke. I lost hearing in my right ear, have severe nerve damage causing partial vocal folds and tongue paralysis. The right side of my face drooped (but was corrected with treatment). There is still weakness in my right arm and I have some cognitive issues. The surgery had a very low survival rate, so I was given radiation. In the past 5 years, there has been no sign of growth!
Without looking it up, what comes to mind when you hear "Moyamoya"?: A fish.... or what you were diagnosed with What disease/illness/syndrome has affected your family the most? : Heart Disease (High Blood Pressure -both parents and myself, Heart Attack- dad), Stroke - Dad, Mental Illness (Depression, anxiety, PTSD - myself and mom), GERD (Gastro-esophogeal Reflux Disease - me) What is an Orphan Disease?: It is a disease/condition that affects less than 200,000 people in the whole nation.
Quote:
OPTIONAL FOR BONUS TICKET Educate me on one of the Orphan Diseases out there
Disease Name:Acromegaly How rare is it?: Acromegaly occurs in approximately 50-70 individuals per one million. It effects men and women equally. It is estimated by researchers that 3 people per million are diagnosed with the disorder per year. Summarize what it's like: Acromegaly is a hormonal disorder of the pituitary gland where it creates too much growth hormone. It can cause gigantism (excessive growth) in all or some parts of the body. The increase in growth hormones causes bones to grow, including those in the hands, feet, and face.
Posted: Mon Oct 22, 2018 2:42 pm
Moyamoya? Isn't that a type of Fish?
[b]FrostyPeaches[/b]| 2, 1, 3
SEMI CUSTOM INFO
Semi-Custom Sex preference: I like either, but if i have to pick one, uhh female? Likes (Max of Ten): 01. sumi-e 02. extra/no eyes 03. it's so fluffy i'm gonna diee 04. tentacles (8 05. galaxy 06. skulls/bones 07. rainbows 08. bunnies 09. long hairs 10. spoopy/creepy Dislikes (Max of Ten): 01. bald 02. bright colours with soft colours 03. clowns 04. real looking spiders
Quote:
Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: Sorry if i am way off... first thing that came to my mind is a bad/severe skin disease... What disease/illness/syndrome has affected your family the most? : Lung cancer What is an Orphan Disease?: Probably something rare? I only hear/read it brought up in your thread. Rare disease that affects very little number of people...?
Semi-Custom Sex preference: Male Likes (Max of Ten):
Soft pinks with soft blues and white Tribal Lisa Frank inspired Clouded leopard markings The ocean Wolves Pretty things
Dislikes (Max of Ten):
All gore including blood and body horror/extra eyes Occult/demonic stuff Green as a base color Anything ugly and disgusting Bugs
Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: Some sort of Japanese character. What disease/illness/syndrome has affected your family the most? : PTSD. I was recently diagnosed with it, but not before it caused alot of problems in my marriage. sweatdrop What is an Orphan Disease?: A disease that has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. An orphan disease may be a rare disease (according to US criteria, a disease that affects fewer than 200,000 people) or a common disease that has been ignored (such as tuberculosis, cholera, typhoid, and malaria) because it is far more prevalent in developing countries than in the developed world.
OPTIONAL FOR BONUS TICKET Educate me on one of the Orphan Diseases out there
Disease Name:Huntington’s Disease How rare is it?: Around 30,000 people in the US have it; that's approximately 1 in 10,000. Summarize what it's like: There is yet no cure for Huntington's and it is always fatal, as the disease causes the breakdown of nerve cells in the brain. Over the course of a decade or more, they will experience gradual decline in their mental and physical abilities. Poor motor skills and trouble swallowing are some of the mid-stage symptoms. At the advanced stages, they are completely dependant on others for care and are unable to even speak or eat.
Posted: Mon Oct 22, 2018 3:29 pm
Moyamoya? Isn't that a type of Fish?
[b]Username[/b]Theidren| 1, 3, 2
SEMI CUSTOM INFO
Semi-Custom Sex preference: Female Likes (Max of Ten): bright colors, pastels (ok basically I like colors 😂), Galaxy, watercolor, bells, gemstones, long hair, floofyness Dislikes (Max of Ten): bald or non floofyness
Quote:
Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: It kind of reminds me of a song (they new baby shark perhaps 🤔) What disease/illness/syndrome has affected your family the most? : Type 1 Diabetes. My father has it and I was diagnosed at age 7, I’m now 31. I poke and prod myself multiple times a day to stay on top of it. I’ve got an insulin pump and a CGM (continuous glucose monitor) which helps me a lot! But it does sometimes get old being “plugged” into something (I’m wired for sound!) What is an Orphan Disease?: A rare disease that affects less than 200,00 people.
Quote:
OPTIONAL FOR BONUS TICKET Educate me on one of the Orphan Diseases out there
Disease Name: Behavioral Variant Frontotemporal Dementia ( a sub class of Frontotemporal Dementia) bvFTD , more info here, and one mooore! How rare is it?: I found a wide variety of documentation of rarity depending on country and year. The diagnosis always falls within criteria for orphan disease status. Per the Alzheimer’s Org “Only rough estimates are available, but there may be 50,000 to 60,000 people with bvFTD and PPA in the United States, the majority of whom are between 45 and 65 years of age.” Summarize what it's like: ICD-10: G31.0 Behavior variant frontotemporal dementia (bvFTD) is identified by marked changes in personality, interpersonal relationships and conduct. In bvFTD, the nerve cell loss is most prominent in areas that control conduct, judgment, empathy and foresight, among other abilities. The diagnosis of bvFTD is by no means an easy task in the early stages, and many of the symptoms are similar in psychiatric disorders and other dementias. Social withdrawal, apathy and limited interest in family, friends and hobbies may become evident. Other symptoms that may be experienced include inappropriate behaviors with strangers, lack of social manners, and impulsivity.People experiencing these changes may become self-centered, emotionally distant and withdrawn.
*sorry I went a little ham on this! I help a lot of patients and families at work who are dealing with these types of diagnosis so this was right up my alley.
Theidren Crew
Offline
Abe no Mizuki
Lonely Dragon
Offline
Posted: Mon Oct 22, 2018 3:30 pm
Moyamoya? Isn't that a type of Fish?
[b]Inari Miko[/b]| 1, 3, 2
SEMI CUSTOM INFO
Semi-Custom Sex preference: CC Likes (Max of Ten): Fire/flames, Yokai, Bioluminesence (all about that natural glow, yo), Black sclera, Feathers, FLOOF, Horn(s), Norse mythology, Hooded capes/cloaks, Broken chains/shackles.
Dislikes (Max of Ten): Zombie rot (exposed organs/bones), Other types of gore (some tasteful blood ok), Arachnids, CMYK, Tentacles (tendrils okay).
Quote:
Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: Something bubbly-sounding (like an onomatopoeia). Or a plant. What disease/illness/syndrome has affected your family the most? : N/A What is an Orphan Disease?: It's described as a disease where fewer than 200,000 people are diagnosed with it nationwide.
Quote:
OPTIONAL FOR BONUS TICKET Educate me on one of the Orphan Diseases out there
Disease Name: Hutchinson–Gilford progeria syndrome (HGPS) How rare is it?: 1 in 18 million (roughly); it can happen to any nationality, from India to the Netherlands to America. Worldwide, there's estimated to be 100 reported cases; there is always the chance more cases go unreported. Summarize what it's like: It's an extremely rare (autosomal dominant) genetic disorder where symptoms resembling aging become evident within the first few months of life. Those born with Progeria usually live until their early 20s at best; most don't live past 13 years old.
Posted: Mon Oct 22, 2018 3:50 pm
Moyamoya? Isn't that a type of Fish?
[b]Niyaru Delacroix[/b]| 1, 3, 2
SEMI CUSTOM INFO
Semi-Custom Sex preference: Female Likes (Max of Ten): 1. fluff 2. pastel colors 3. Heterochromia 4. naturals (natural ponies, wild cats, foxes, etc just all things natural colored?) 5. glow 6. flowers 7. crystals 8. skeletons (i.e. skulls, bones, etc) 9. lace 10. moons and stars theme Dislikes (Max of Ten): 1. tentacles 2. clowns 3. holes 4. aquatics 5. yellow 6. goop 7. clashing colors 8. missing sections this guy is a good example 9. really short hair 10. flutter Antenna
Quote:
Delete this entire quote if you're not using any images Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: I don't know why but Moana comes to mind. What disease/illness/syndrome has affected your family the most? : From my family heart attacks / heart disease and my fiance's family multiple sclerosis / auto immune diseases. What is an Orphan Disease?: Idiopathic intracranial hypertension
Quote:
OPTIONAL FOR BONUS TICKET Educate me on one of the Orphan Diseases out there
Disease Name:Idiopathic intracranial hypertension How rare is it?: For the general population it is about 1 per 100,000 but for obese young females it raises to about 20 per 100,000. Summarize what it's like:hell - I was 'lucky' enough to have this hit me out of no where while I was in college. I woke up around 4 in the morning with my head hurting so bad that it woke me from a dead sleep. Best way I can describe it for me is like putting a bag of popcorn in the microwave. The bag gets bigger as the popcorn pops and at some point you think the bag might explode so you stop it. I felt as if my head was going to explode, my brain didn't want to be in my skull anymore. I rushed to the emergency room and it took a lot of tests, trials of medication, e.r. visits and doctors to figure out what was happening to me and why. It affected my memory and eye sight.
I still have it but after losing weight and trying to take better care of myself, I have an episode rarely. I can safely say that I have only gone to the e.r. once since I moved in with my s.o. for the 'migraine'. The e.r. doctor was nice enough to send me home with reglan so I wouldn't have to come to the e.r. again.
Semi-Custom Sex preference: female Likes (Max of Ten): Visual Effects, Elegant Gothic, Sugar skulls/ day of the dead, bone accessories/clean bones, lanterns, halloween/samhain theme, green/purple/charcoal/orange scheme, roses and flowers associated with death/mourning ect – Marigolds, chrysanthemums, Dislikes (Max of Ten):tentacles, extrails, funky tongues, dislocated/unhinged jaws, excessive gore, large amounts of pink
Quote:
Delete this entire quote if you're not using any images Optional: Three inspirational images
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: honestly... nothing really other than the facts you posted ... What disease/illness/syndrome has affected your family the most? : the very common ones of diabetes, high blood pressure and varying heart issues... What is an Orphan Disease?: A condition that affects fewer than 200,000 people nationwide, according to US definition. The EU defines an orphan disease as a rare disease that affects fewer than 1 in 2000 people.
OPTIONAL FOR BONUS TICKET Educate me on one of the Orphan Diseases out there
Disease Name:Aarskog Syndrome Alias'- Aarskog disease Aarskog-Scott syndrome AAS faciodigitogenital syndrome faciogenital dysplasia FGDY Scott Aarskog syndrome How rare is it?: An estimated population prevalence of Aarskog syndrome is equal to or slightly lower than to 1/25,000 Summarize what it's like: An X-linked trait caused by a mutation to the FGD1 gene. Primarily affects males, but females can carry the gene. Affected males exhibit a characteristic set of facial, skeletal, and genital abnormalities.
Posted: Mon Oct 22, 2018 4:09 pm
Moyamoya? Isn't that a type of Fish?
[b]Melomar[/b]| 2, 1, 3
SEMI CUSTOM INFO
Semi-Custom Sex preference: Male Likes (Max of Ten): - Cool colors - Natural colors - Animal patterns w fantasy colors - Reptiles - Feathers - Floof - Shamanistic - Light armor - Canine pokémon
Dislikes (Max of Ten): - Realistic spiders - Super cutesy themes - Body rot
Quote:
Delete this entire quote if you're not using any images Optional: Three inspirational images
("Litany Against Fear," from Frank Herbert's Dune / Lycanroc and / Entei, from Pokémon)
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: Birds. I think, "myna myna," like the mynah bird. What disease/illness/syndrome has affected your family the most? : Alcoholism, if you'd count it. It's really bad on one side of my family. Otherwise, probably PTSD, related to lifelong abuse and sheer number of deaths in the family. Feel free to inquire. What is an Orphan Disease?: Before looking it up, I thought an orphan disease might mean one that comes from a spontaneous mutation. But according to the FDA, "An orphan disease is defined as a condition that affects fewer than 200,000 people nationwide." Therefore, there is not enough of an economic reason to pursue research, treatment, etc. [by pharmaceutical companies I think], and funding that lead to any breakthroughs would come from sources like government grants and fundraising.
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:Job Syndrome How rare is it?: Fewer than 1 per million people, with an approximate 330 million population of the US, that would be approximately 300 people nationwide. Summarize what it's like:Job syndrome is named after the biblical character Job, whose religious faith was tested by a series nasty skin infections. Other names include: Job-Buckley Syndrome, STAT3 deficiency, Hyperimmunoglobulin E syndrome, and Autosomal dominant hyper-IgE syndrome (AD-HIES).
It is caused by a mutation in the STAT3 protein, which contains instructions for making new genes in several body systems, and affects regulation in maturation of T cells and other immune system cells.
Transference is usually by inheritance through a dominant gene (presentation requires inheritance from only one parent). Sometimes it is caused by a new mutation of the same gene where there is no family history.
Symptoms can include the following: - Higher than normal level of the antibody IgE, which leads to unnecessary and detrimental immune response. - Longterm and severe skin scaling and rash, eczema, abscess and infection. - Scoliosis (curvature of the spine), loss of baby teeth later than normal, hyperextensibility of joints (range of motion is abnormally large), osteomyelitis (bone infection) and other skeletal symptoms. - Repeated lung abscess and/or infection, bacterial pneumonia, repeated sinus infection and other respiratory illnesses. - Dry eye syndrome, which can affect vision. - Abnormality of arteries serving the heart that affects blood flow. - Distinctive facial and brain abnormalities (superficial)
There are treatments but no known cure. The focus is on treating the infections, with antibiotics, antifungal, and antiviral medications as needed to control infection and prevent sepsis.
Thank you for sharing with us your personal journey of discovery and illness. I imagine it's difficult to talk about, especially since your condition is so rare. Thank you also for sharing your artistry as you celebrate being stroke-free for a whole year. I really appreciate your generous gesture. :3 <3
Melomar
Wind-up Waffles
Offline
Natsuko-neko
Unstoppable OTP
Offline
Posted: Mon Oct 22, 2018 4:24 pm
Moyamoya? Isn't that a type of Fish?
[b]Natsuko-neko[/b]| 1, 3, 2
SEMI CUSTOM INFO
Semi-Custom Sex preference: Female Likes (Max of Ten): Natural animal coat patterns, bats, foxes, Japanese themes, mythology, Overwatch, Mass Effect Dislikes (Max of Ten): Bright pinks, heavy gore, bald, neon
Questionaire
Without looking it up, what comes to mind when you hear "Moyamoya"?: A name for a pet Marimo moss. What disease/illness/syndrome has affected your family the most? : Cancer What is an Orphan Disease?: A disease that only effects a small percentage of the population so it's very rare.
Quote:
OPTIONAL FOR BONUS TICKET Educate me on one of the Orphan Diseases out there
Disease Name:Alexander Disease How rare is it?: Very rare as only 500 cases have been reported since it was discovered. Summarize what it's like: It effects the nervous system and depending on the age it starts up can have some different effects. If it follows the most common age of around 2 years old then it can end up effecting head size, enlarging the brain, causing seizures, causes intellectual disability and developmental delay as well as making your arms and/or legs stiff. If however it's the even rarer cases that happen later in childhood or even adulthood then it can cause speech problems, makes swallowing difficult, seizures, and poor coordination.
