Fighting Sarcoidosis | From Strength to Strength
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- เผยแพร่เมื่อ 4 ต.ค. 2024
- What does it mean to live with a disease knowing that it does not have a cure? What does it mean to navigate Pakistan's corroding and sexist healthcare system all on your own as a single woman with an autoimmune disease? Husna Ali, a journalist based in Karachi, Pakistan shares the story of her journey with Sarcoidosis which is a rare autoimmune disease.
Every year, numerous people in the world are diagnosed with Sarcoidosis, most of whom are women. Exact figures are unknown, owing to the rarity of disease and difficulty in diagnosis. South Asian women in particular often get to know that they have Sarcoidosis when it's already too late.
Voices of South Asian women with Sarcoidosis remain underrepresented to this day. This film aims to change that, and highlights what it means to live in Pakistan as a woman with Sarcoidosis
#autoimmune #autoimmunedisease
#southasianwomen #sarcoidosis #sarcoidosispakistan #invisible illness #sarcoidosisawareness #pakistanhealthcare
کیسا ہوتا ہے کسی ایسی بیماری کے ساتھ رہنا جس کے بارے میں آپ کو علم ہو کہ یہ لاعلاج ہے، کیسا ہوتا ہے ایک بوسیدہ اور پدر شاہانہ صحت کے نظام سے ایک اکیلی عورت کا گزرنا۔ کراچی سے تعلق رکھنے والی صحافی حسنہ علی اس ڈاکومنٹری میں اپنی بیماری (sarcoidosis) کے ساتھ ایک طویل جہدوجہد کی کہانی بتا رہی ہے۔
دنیا میں ہر سال کتنے لوگ اس بیماری میں مبتلا ہوتے ہیں جن کے اعداد و شمار تک موجود نہیں ہیں ، جنوبی ایشیا کی اکثر خواتین اس بیماری کی دیر سے تشخیص کے باعث اپنی جان گنوا بیٹھتی ہیں۔
اس فلم کے ذریعے ہم اس بیماری پر روشنی ڈالنا چاہتے ہیں اور ان ان گنت بے نام خواتین کی struggles کو highlight کرنا چاہتے ہیں اور یہ بتانا چاہتے ہیں کہ پاکستان کی ایک عورت نے کس طرح تنہا اس بیماری سے مقابلہ کیا۔
Deeply moving and inspiring despite capturing only a snapshot of the many struggles with disease management, diagnosis and care faced. It gives hope to patients of chronic illness but also makes a case for systemic reform of health care to understand, emphatise care for patients with autoimmune diseases.
Duniya me mumkin aur na mumkin hai
ALLAH k Han sab mumkin hai
INSHA'ALLAH apko n ap Jesy Baki logon ko shifa zaror mily gi bemari se phly ilaaj utra hai INSHA'ALLAH ap thk ho Jain gi
Meri bohot duain Hain k liy
N u r brave strong Khushi Hoi ap ne himat nai Hari aur na harni hai apko larna hai itna k is bemari ko bhngna hi pary ye kehty hoe k nai bai larki strong hai yahan apni nai chlny wali 🤭 get well soon
N surah Rehman lazmi suna kijiye 🤲
آپ بے حد بہادر باہمت اور بلند حوصلہ ہیں
اللہ ہر شے پر قادر ہے اس کے لیے کچھ بھی ناممکن نہیں صدق دل سے دعا ہے اللہ پاک آپ کو کلی شفا عطا فرمائے آمین
you were a fighter,,, you are a fighter,,,, be strong & keep fighting.......,, always and always...... 😍🥰
Buhat buhat duaain sister 🤲🤲🤲🤲🌹🌹🌹🌹....aap buhat bahimat hain Allahpak Apko shiffa atta fermaye ameen .... Aur sub beemaron KO sehat atta fermaye ameen ❤️🤲🙏🤲
Get well soon Husna🤲🤲
Deeply moving
first time I heard you on a radio show and I was shocked to hear about SACOROSO I really appreciate your surviving 💫💯💞
Ek bahimmat comrade ki kahaaaani...
Jo harrr haalat main resistance k himmat rakhti hain...
Aor isss haalat main b logon k baary main sochna aor ye video banaaa kar logon ko sarcoidosis k baary main aware Karna barhi Baaat hai...
Salamati or salute ho aap pr...
a very inspirational story and example, awareness of this disease must be achieved.
I am so proud of the woman you are, have always admired it and how uve managed to live with this disease..women mostly get criticized for their own suffering and pain and nobody takes them seriously..... Thanks for sharing ur story and standing with all the sarcoidosis survivors... Sending all the love, light and happiness ur way... And ur plants too....
Very informative video by kulsoom foundation and more power to patient who's fighting this disease .
I am speechless about the struggle you have gone through you have been a great source of inspiration for people like me may god bless you with more strength and courage
You are very brave for fighting this disease alone, inshallah Allah aap ko sahi kar le
Allah sehat day ap ko ameen WE WANT TO SEE YOU BACK IN WORK
Once I was reading your article, I thought someone is narrating my story …. I second you about your each and every words written in articles and video.
Am also a patient of sarcoidosis since 2015
We arec so sorry that you had to go through this as well, but really happy to know that you watched our movie and it resonated with you. Please join us in creating awareness about this disease. Join our fb page. Also you can write to husna at theweekendpost@gmail.com
u are always a brave lady,,,, my heart melted after watching this video,, you are such a darling friend & sweetheart sister....... lots of love & prayers for you...... your brother from an other mother....
Allah will help you 🤲🤲🤲I pray for you everyday everytime Husna🤲🤲
A big salute to you, Husna. Despite its hardships, for having the will & strength to make the film on a challenging illness many have not even heard about. And for possessing the fortitude to share your story with the world. Hoping this encourages others to share theirs.
- Anuj, New Delhi
You are brave soul and fighting spirit Husna I saw you in your difficult times you act very courageously throughout your journey of life and still trying to manage everything in this condition MashaAllah. Allah helps you in this pain and gives you more strength to fight back easily from this too in life. And by making this video you are an inspiration for all women.
Brave. Support system for many needy families more power to you API ❤️
👍 very informative , loved that depression part, bimari jism mai aur ilaaj dimagh ka, so true
God give you speedy recovery and healthy long life ❤
May Allah give you more strength to stand up for yourself.
More power to you, thanks for sharing your story.
Get well soon 🤞.
Very informative video..
Thank you so much for sharing your story. A friend of mine with sarcoidosis recommended it. I am sure it will be a great help to all those with sarcoidosis who feel isolated and as if no one understands what they are experiencing.
Very brave husna.Allah apko jaldi sehat o shifa day Ameen.
May Allah help.you in recovery
Get well soon
I would aslo like to say thanks for making this highly informstive documentary.
I also have sarcoidosis but have not suffered to the extent you have. What triggered the disease in me was taking Vitamin D supplements. All women in the US from middle aged on are told by their doctors to take these supplements to "Keep their bones strong". The very opposite happens to those who have sarcoidosis. The hypercalcemia it caused gave me chronic health problems with my vascular system and heart. The granuloma production the Vit D accelerated ruined my eyesight. How will you know you have sarcoidoses? You won't until you become extremely ill. It's actually good to have skin granulomas which are easy to biopsy and get a definite diagnosis.
Husni, I feel for you and hope you can find some sort of regimen that will lessen the symptoms of the disease in you. I admire your courage!
Oh wow, this is exactly what happened to me...years of chronic hypercalcrmia due to vit d supplements caused irregular heart beat, bone pain and atherosclerosis. They used to check my pth level, but never bothered to check 125d levels, which is the active form of d.....I think the journey of misdiagnosis of most ppl with sarc is pretty much the same.
.its so nice to connect with people who have similar disease...makes you feel less lonely. For me the progession is fast as I have muscular involvement and suspected neuro sarc which has damaged my nerves...unfortunately I can't take immuno suppressives anymore.
Happy to know that you are managing well. May you continue to do better and achive full remission.
Rgds
Husna
Get well soon ❤
Aap bahut himmat aur hoslay wali hain... kyunke akelay aapneaap ko manage karna bemari main aur Pakistan jaesay mulk main akelay rehna he sub se delayri wali baat hai... Allah aapko jald shefa dain aameen ❣️
Salute
This is a very informative video indeed!
very informative ....Allah aap ko sehat tandrusti aur Shifa ata frmaien Aameen Ya Rahman Ya Shafi
Allah aapko sehat de ameen.. u r brave lady
Such main nice person
Excellent work, very knowledgeable for those who is suffering from this illness.
God bless you. Get well soon Inshallah.
God bless you ❤
اللہ آپ کو صحت دے
May Allah bless you with health and long life, and removes all your pain. Trials arr faced by Prophets, then who are we to cry.. ask Allah for help. Just get closer with Allah. My heartiest duas are with yuo, strong lady
Husna, You are so amazing. So strong and with such a beautiful heart and soul for all the fight you have done for others in your life and career. I am so sorry you have been struggling so much with this condition. Thank you so much for putting your experiences into this video, which will be so helpful for others struggling with this condition and thier friends and family to understand. I thought the images of your plants alive and flourishing and dried out summed up this condition so well and how it feels living with it. Take care and thanks so much for your sharing.
You're an inspiration ✨️
I am very surprised.... May Allah give you more strength, you fought this illness very long. What are the major causes of this illness?
Genetic , but environmental triggers like mould (fungus) , bacterias and stress are considered some of the factors behind this disease.
You are one strong woman mashaAllah...you have grown and evolved as a person in this journey..♡ xoxox
What a great documentary Haya!! Thank you for working on this disease. I hope it reaches many and women suffering from this disease will feel heard and connected, and won’t feel alone. ❤
May Allah give you complete shifa ❤
May Allah bless you good health. We all are praying for your recovery and better health.
I am also fighting with this disease I am really in stress right now 😢
Share your contact details or msg us @Kulsoomfoundation.pk@gmail.com or leave a msg on our FB inbox, we will try to help as much as possible.
I pray for you all the best. I deal with this disease also. It’s never a dull moment.🙏🏾🙏🏾
Thank you Sally. We are in this fight together. 💪 ❤
It takes a lot of courage and strength to come out and open yourself for a great cause and spreading awareness by putting yourself on line. Your words and story fuels strength for people going through not just the same challenges as you, but also for those that are fighting similar battles in other forms. Great to hear and see a warrior like you. Keep up the smile. Its a sign of a warrior.
Sister ap rohani ilaj karwayn.Insha Allah Shifa mily GI.
Very informative. Thats a tough life to live
Very nice and informative video. Salute to you for bravely fighting this disease
❤️
This just brilliant work. What a brave lady
Allah ap ko shefa ata kri ameen
may God bless you
ALLAH WILL HELP YOU I PREY FOR YOU EVERYDAY 🤲
I m single and also dagnosed with sarcoidosis in 2021... can we talk in person mam
You can email her at theweekendpost@gmail.com
❤
I am from London recently doctors ny mujy sarcoidosis btyia ha they gives me some steroids smaj nai a rhi k kya karu 😢😢😢
Hi, thank you so much for your msg. First of all, I am sorry that you have this disease. Secondly, I would encourage you to weigh the pros and cons before starting any treatment. If you have cardiac, lungs , eyes or brain involvement , then do not wait too long. I know you must be feeling confused and scared right now, but remember that you are not alone. Join inspire stop sarcoidosis , you will find alot of good information and people just like you. I wish you speedy recovery from this disease ❤
@@KulsoomFoundation can I have your contact number if you don’t mind
@@muhammadabbas1126 Kulsoomfoundation.pk@gmail.com
So sad
This does not look like sarcoidosis . SLE MOST LILKELY. Ready to see and help this lady without any fees.
SARCOIDOSIS may coexist with othe autoimmune diseases
Yes, she was diagnosed with SLE initially and later sarcoidosis ( biopsy proven ) . But she also has sjogrens disease / mixed connective tissue.
Please share your contact details clinic address and we'll pass the info to her....