Help anam with rare disease

Hala Shafique is organizing this fundraiser.

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●Fundraising for my(hala shafique) younger sister●

Hello there, my name is Anam and I’m 32 years old with 2 daughters of age 4 and 6. I’m diagnosed with a rare disease called systemic sarcoidosis and SLE which is auto immune disorder. To begin with , it all started in May 2020 when I felt my eyes were getting dry abnormal than usual. I didn’t pay attention , few days later three mouth ulcers happened to appear on my gums, painful as they were I didn’t go doctor and applied local dental ointment on them. Two months passed and nothing particular happened. In mid August a deep lesion appeared on my outer side of right buttock. It was lush red in colour and very painful. It kept spreading and covered a plentiful area. Then I noticed these lesions were on my legs and on my left buttock, deep down the skin but not painful. I went to GP and they said it might be swollen nodes and prescribed few medication including antibiotics, and did not require further tests or investigations of blood etc. I took the medication and it got worse, they appeared under my armpits and few on my neck. Luckily my sister who is child specialist ,she referred me to a dermatologist. On September 7th , I was diagnosed with Erthma Nodosum, my ANA came positive . A biopsy was performed on one of the lesions and I was diagnosed with lupus panniculitis, in blood tests I was diagnosed with sjogren syndrome and SLE . 80 mg prednisone was started as a first line of medication along with anti malaria and MMF ( cellcept) . In November I started having chest pain and then echography was performed and I was diagnosed with Acute Pericarditis with 90% inflammation includes fluid . I was admitted in hospital for fifteen days and was on heavy steriods IVs. During the stay I was having trouble breathing and HRCT scan was performed and there, they diagnosed pulmonary sarcoidosis, soft tissue rheumatism and raynauds syndrome too . So the doses of steriods were multiplied. Doctors were shocked and so was I. I left my kids at my sister’s place where my mother was taking care of them. After two weeks I came home and stayed on oxygen for three months. I was 70 kgs when I started showing symptoms and I was 100 kgs with steriods , taking 80mg steriods and lots of other medications . Between these days my ALT was raised to alarming point , now the liver was involved too. Days passed and disease travelled in my brain . And MRI of my brain was performed and an abnormality was seen in right middle cerebral artery. MMF dose was doubled after that. Months passed and I felt my vision is getting compromised, there I was diagnosed was granmulous uveitis in one eye. The third line of medication was the last hope Remicade infusions . Intra ocular steriods injections were performed . Then it travelled to my left eye. Vision of right eye was 80 percent gone. I received 4 intra ocular injections in my right eye to save them vision as remicade needs time to effect. Now I’m left with weight of 115 kgs and dosage of remicade infusion after every 6 weeks. A week ago I have started having bloody stools, a colonoscopy is still to be done. Hospital stays , weight gain , emotionally painful experiences have broken me to the core. I’m staying with my parents and they are taking care of my kids. Remicade infusions is very costly and I receive 500 ml remicade which means I need a lot of money ●every month●for my 6 weekly infusions. Every month i need atleast £500 just for my infusions, which is the last hope for my disease to go in remission. Please Remember me in your prayersThanks Jazak Allah 2