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    lack of support for primary Immune deficiency diseases

    What is behind the lack of support for primary Immune deficiency diseases?

    Why do so few primary immune deficiency patients get the support they need? Why is it so hard to raise awareness? These are questions I have pondered much of my adult life. I have fought much more than a rare and life threatening disease, I have had to fight ignorance as well. Its not just me. I have observed time and time again with other PI patients and their social circle as well. I have both experienced and heard about situations that if you were to fill in the blank with another disease in place of PI it would rarely happen. Parents being judged instead of supported as their child is dying, People unwilling to take what are by all logic reasonable precautions to protect a patient, and seriously sick patients being treated as selfish fakers and drama queens instead of being offered the respect and support they deserve. Enter Coronavirus. Now we have Facebook statuses urging everyone not to panic because only people with weak immune systems will die!

    Life was never easy for anyone born with a disability. In fact we are living in the best times ever. It is believed by many that the Spartans left their weak and imperfect infants to die on mountain tops or threw them off cliffs. Throughout early history disabilities were often seen as a curse and the disabled were thought to be able to give the evil eye. Disabled people have been burned, hanged and in more modern history thrown into institutions where they had little chance of ever joining mainstream society. Even today there is ritual killings of people with albinism in Malawi. Given our history is it any wonder those of us with invisible disability are often given a hard time or are left feeling not very cared about?

    I get why we don’t get the concern or funding for research as other diseases. Most people take their immune systems for granted and know very little about how it works or what happens if its not working properly. There is little about PI in the media or in film so people lack the framework that they have for many other diseases. Primary immune deficiency diseases are also rare and aren’t contagious so the attitude is why should we care or donate towards finding a cure? Its not me or mine.. Even if it is!

    But we are a culture that claims to value children. Why is so little funding given to fight for a cure for genetic diseases? rare disease is a leading killer of our children. Nearly a third of the children with rare disease will not live to see their 5th birthday. rare disease is responsible for 35% of all deaths (of any cause) during the first year of life! Less than 5% of Rare Diseases currently have a FDA approved disease altering therapy that permanently cures or stops the disease.

    Right now is where you may want to stop reading this because I am going to tell you what I really think. Here it is. There is serious discrimination against those born with genetic weakness throughout mankind and the animal kingdom that is passed down. Studies on mice and other animals have shown that some information such as fears can be passed down to future generations. It is well known that all human babies all have a fear of falling and loud noises. l.facebook.com/l.php also describes a Collective conscious in his l.facebook.com/l.php in 1893. Collective conscious is ideas, morals, beliefs that are common to the average person.

    In birds something called Siblicide occurs when resources, specifically food sources, are scarce. The strongest or most aggressive bird kills off its siblings to eliminate competition for food. Or sometimes its the parents that choose to feed only the strongest bird, while the weaker one squeaks for food until it eventually dies. This ensures that the bird with the best chances to live and best genetics passes its genes on down the line.

    I think this is deeply ingrained in the human race. Those with genetic defects are weak or the weakness is a sign of intellectual or personality defects. I know first hand the opposite to be true. Adversity builds strength. Its easy to be born healthy. Its hard to survive when you have a lot stacked against you. Even getting a diagnosis or adequate medical care is often a journey that takes many years when you have a rare disease. I know children that understand more about the human body than do most healthy adults. Genetic weakness yes- inferiority absolutely not! Most of us have so much to offer the world- if given the chance.

    I have been blessed to have known many smart and compassionate people, people who do not believe in their heart or hearts that individuals with genetic defects should just disappear like a weak hatching. And for those who secretly do, patients like me aren’t going anywhere quietly. Modern medicine has been very kind to me. Without the discoveries of antibiotics and later immune globulin there is now way I could have survived Blood and plasma donors are my rock stars! Without you people like me wouldn’t live so very long. The love of my mother and later my husband are why I survived when society may have had me tossed away. To both of them I am eternally grateful. With love almost anything is possible. Even the weak and defective can thrive.

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    Youtubers with chronicillnesses and disabilities

    Youtubers with chronic illnesses or disabilities

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    ResetwithTerry | Graves Disease

    FranklyFranca | Graves Disease

    Emma Tara |

    Shaina Leis | Maladaptive Daydreaming

    Leah Dawn | ME, IBS, Emeraphobia & #Depression

    Crafting For Almost Everyone.

    Dodie – Depersonalisation Disorder

    Cara – Cerebal Palsy

    Sarah rose – #Fibromyalgia

    Life Of A Blind Girl – Retinopathy

    Fashioneyesta – #SeptoopticDysplasia

    Zoe’s Clan -EDS & co

    Serhat Eronal – #SpinalCordInjury

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    WheeledNomad | EDS & co

    Wheels2walking | Injured Paraplegic

    Able Family | Injured Paraplegic

    Jordan Bone| Injured Paraplegic

    Juliannado | Special Needs & Crohns

    Alma Guerrero | #SpinaBifida

    Fae System | Antisocial PersonalityDisoder & Bipolar

    BriaAndChrissy | OCD & PTSD

    Anna Campbell | Bipolar

    The Labryinth System | #DissociativeIdentityDisorder

    Crystal | Gastroparesis

    Liddy Alvarez | Fibromyalgia

    Kay Bre | Fibromyalgia

    The Life Of Me Smile Magee | Cancer, #Gastroparesis, Dysautonimia ETC

    Tayarra Smith | , Sherman’s Disease, #CyclicVomitingSyndrome & spine GI issues

    Grace Nicole | Schitzophrenia

    Rachel StarLive | Schitzophrenia

    Shane Dawson | Depression & Body Dysmorphic Diisorder

    Izzy MS | #MultipleSclerosis

    Chronically Lyss | #Arthritis

    Ellen Jones | Autism

    Kay Maynard | Autism

    MaxluvsMya | Autism

    Rhiannon Salmons | Autism

    The Aspie World | Autism

    Assistance Dog Adventures | Chronic Lyme

    Lemons N Lyme | Chronic Lyme

    Kim And Ross | Lyme, & ME

    Prisha Bathia | Sturge Weber Syndrome

    Lauryn Elizabeth | Hyperprolactinemia

    Shontelle Scott | Gastroparesis

    This Girl Audra | , IBS and OCD

    Gabrielle Ferguson |

    Krissy Mae Cagney | & Celiac

    Steadfast Soul |

    Brooke Houts | #Anxiety & Depression

    Nine and Vine | #BloodCancer

    Jpmetz | MS

    Invisible I | & Autism

    Ostomy Diaries | Crohn’s disease

    SarahWithStars | #ChronicPain

    Trisha Paytas | BPD & PID

    The Frey life | #CysticFibrosis

    Eyeliner and Empowerment | #CerebralPalsy

    Robyn Lambird | Cerebal Palsy

    But Ya Don’t Look Sick |

    Molly Burke | #RetinitisPigmentosa

    Painful Hilarity |

    Lucy Edwards | #Blindness

    Kelsey Darragh | #TrigeminalNeuralgia

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    The Killen Clan????

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    Holly Vlogs | Crohn’s Disease

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    I am still ME

    PerfectlyKnitBeauty| #NeuromyelitisOptica

    Channon Rose | , PTSD, , ADD, Endometriosis

    Ally hardesty | ADHD

    JD Dalton | #Albinism

    ASL Stew | Deaf

    WheelsNoHeels | Spinal Cord Injury

    Rikki Poynter | Deaf

    Kathryn Morgan |Hypothyroidism

    Pain Doctor | Chronic Pain

    CFS Health | ME/CFS

    Young Chronic Pain | Chronic Pain

    MultiplicityAndMe | Dissociative Identity Disorder

    Stephanka | #AplasticAnemia

    DisociDID | Dissociative Identity

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    OhSoAdrianna |

    Amythest Schaber | Autism

    Invisible I | & Autism

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    Pixiwoo|

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    A Thousand Words | Adrenal Fatigue

    Living With Addison’s | Addison’s disease

    Madison Decambra | BPD

    KaraLou |

    The Dale Tribe | Type 1 #Diabetes

    Claire Wineland | Cystic Fibrosis

    Jessica Kellgren-Fozard | HMPP, MCTD & co

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    Olga Chronics |

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    Zebra to Zebra | & co

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    Morgan Grant | & co

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    Abby Sams | , CRPS & co

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    Not Your Average Zebra | & co

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    Amy’s Life | & co

    Annie Elainey | & co

    Chronically Kimberly | & co

    Chronically Jaquie | , Mito & co

    Sophie’s Life | & co

    Life With Stripes | & co

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    Rikki Poynter |Deaf

    IDrankTheSeaWater | Tourette’s & Mental Illness

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    Josh Sundquist | Amputated Leg

    Anne Spicer | Crohns & gastroparesis

    Sleepy Santosha | Adrenal Insufficency

    Live Hope Lupus | & co

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    Moly Christopher | /ME

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    MegSays | ME

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    VlogBrothers | & Chronic pain

    Fibro Mom |

    Service Dog Vlogs |

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    Beckie brown |

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    Sammy Marie | &

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    Tara Lou |

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    Crohn’s disease

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