rare genetic diease/sickness let's talk about it.👀
plz follow me on my health journey(I.e YouTube channels are @ChasdigestiveExpedition - @Neverknowgirly+1)
😣🫡🤗😇 plz keep me n my fam in prayer we are struggling DO not get help ijs~been praying n looking.
God will provide tho through it all we gotta have faith n believe tht even when it feels hopeless...daily..
for me ...its..do so hard.. I'm fighting isolation, pain...mental,emotional ,physical pain. only God can help with cuz he truly only cares about me.n the Family he has given me.
God bless all my kind brothers n sisters in Christ whom are still helping ppl as we did when we were up on our feet lord sees us all still don't give up! fight the good fight! run the race we aint out yet!!! until the lord says SO 🫂❤️🔥🫡😇🤗😢love you all!.
I'm praying n ask for strength to keep going, to help me stay praying for the strength💪🏾
for all the sick,in property,unsafe situations, trafficked,DMV victims,clinics, hospitals,mental wards asylum'ideon.🛌🏥🌄
we are not here for ourselves only ppl! lets not forget those who are really in harms way rather it be mentally, emotional, physical its a lot but we here to serve the lord purpose he said the poor wud be with us always. I know not everyone belives in our lord n savor but we are one race human race. one heart one love one ppl as it sould be in a perfect world you know. we can do better Far- more than we do. smh
if all I'm able to physically do Is... spread God's word online with the strength he GIVES me I shall do so daily. do I wish to be healthy again n make REAL IMPACT in the world yes it 🌍🌎🌏.
I see needs,I see so much I want to change for Gods glory n GOOD for humanity. knowing that yes the attack against my ideas n God righteous wud be on. its never not been war against evil n whom it chooses to work through against God so 🤦🏾♀️🤷🏾♀️ side bar--.
yea what I got going on is real💁🏾♀️ yes I've tried to be my own advocate but I'm extremely treid😮💨😖...daily so yes need a case worker looked last year both 2024/2025 no insurance so yes it been hell (real place ppl n yes u can feel like your there when you constantly are going through stuff let's be REAL here).
my caregiver my mom isnt young 68 has her own health issues BLESS her 😞 so if you can imagine n or have dealt with being a caregiver for family or freinds or in hospitals, nurseing homes etc you sould be familiar with the familiar physical, emotional, mental toll it can take. my eyes were opened to just how cold n heart less the US so called healthcare system is here. we all know it, but nobody's doing anything about it. it gets darker than that just tip of ice berg but.. and uts not just 1 but all system n laws ahem both old n current ones if u catch my drift...I digress.🤔
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A ask for help yes much... last 2 worth.🤔
side bar -the right kind help only comes from God. he can give n through others to help along the way as well I'm just addressing some questions n thoughts that cud be asked n have been ijs in general ijs fr.
etc so..
~if ur asking who I am names cha for short🫱🏾🤓. just turned 32...n disabled no fighting to be seen n get help has been...nightmare these past 2 years. ~
Making awarenesses I.e...ive tryed.😔🤕
God knows..he sent us 2 souls who helped along the way thank u jesus.
I do have a story n testimonials.
u got qeustoin comments
you might too right feel free to share them I'd like to connect and hear. you are seen by me n hopefully others n heared to were we can build community ,family,the surport systems like I never got by a system that wasn't built for me n ppl similar to my situation n etc didnt get let's be that to each other. free,does not hurt,and ur heared .networking can also be beneficial if someone has needs and I dont know something.. maybe someone else does so.. dont know until u ask. ijs
we need community that really cares for each other out here. smh
no I do not have insurance. this visit is on the hospital
when I say my only help is God it is n my fam members thats it n there treid too fr fr.
the frustrating facts are that this is n can be changed if the world wasn't as it is. so plz plz keep us in ur prayers, your in ours always besties.
if u wish to help by all means feel free
$uni3194 no pressure goes to food n basics. ijs
Living with a rare genetic disease is an ongoing challenge that often brings physical pain, mental and emotional struggles, and a profound sense of isolation. I deeply relate to this journey, having witnessed loved ones navigate the complexities of rare illnesses without adequate insurance or support. The toll on caregivers is also immense—they face physical exhaustion and emotional burnout while striving to provide care. One of the most difficult parts of dealing with rare genetic conditions is the struggle to find the right medical help. Many patients face systemic barriers in healthcare, including limited resources, complex eligibility criteria, and sometimes a lack of understanding from medical professionals. This can create a feeling of being invisible or unheard, which adds to the emotional burden. Faith often becomes a crucial anchor, offering hope and strength on the hardest days. It can provide a community of support and a sense of purpose that helps carry individuals through prolonged struggles. Simultaneously, building networks of support outside traditional healthcare—through online communities, advocacy groups, and peer connections—can empower patients to share experiences, resources, and encouragement. Practical steps to navigate this difficult path include documenting symptoms carefully, seeking second opinions, and connecting with organizations dedicated to rare diseases. Applying for assistance programs and looking for local resources can sometimes help alleviate financial pressures. Importantly, spreading awareness about rare genetic diseases helps foster empathy and can encourage improvements in healthcare policy and patient services. Personal stories, like this one, highlight the urgent need for a compassionate healthcare system that truly supports all individuals regardless of their circumstances. For anyone walking a similar road: you are not alone. Reach out, share your story, and seek community. Together, we can create a stronger support network that brings light into the challenging journey of rare genetic disease.
if u got qeustoind plz keep it respectful, I don't mind sharing my journey n story. the Assuming n judgment is unreal lol online but I get it. 😂 still tho thats all I ask.