Hi, My name is Sunny Singh, I a Sikh Indian and I live in Singapore. And I have Cystic Fibrosis. I am 24 years and was diagnosed with CF at 6 months. Here in Singapore there are no CF doctors or any CF centers. Yes, I am the only CF patient in this country. I have no relatives with CF and do not know anyone with CF.Where do i get my treatment and medication? I travel to the UK and Australia every 6 months and carry back home with me 6 months supply of colistin/tobramycin and creon enzyme. Doctors here do not understand cystic fibrosis and evertime i get sick i simply take cipro 750mg for 2 weeks.As a CF sufferer i am fortunet to be healthy. My FEV is about 85% but my lungs x-ray do show bronchiatatisis (lung damage) at certain areas. I am no doctory but i can make out the difference between a normal lung and mine. Mine is dirty as what the doctor here says.I vist the cff.org website everyday without fail hoping for some goods news of a cure. I don't understand what the future stands for me and yes i am scared. Being a CF sufferer knowing no-one is like me that surrounds me is very depressing. Anyone has any comments to brighten me up? Is there any asians or Indians with CF out there??
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CF Indian
- Thread starter anonymous
- Start date
Hi Sunny, reading your expereince as someone living in Singapore with CF, must throw up lots of hidden challenges i.e. dehydration or recurrent infections, how do you find the climate?I have CF myself and working for the UK CF Trust as one of 12 advocates who all have CF with the view to improving care and service delivery. You mentioned that you come to the UK for a review and stock up of medication, which hospital do you attend (Bromptom), only we do have an advocate representative Janine Cortilla (email Jcortilla@cftrust.org.uk).Also there are certianly asian young people with CF, you may wish to try the CF trust web site (www.cftrust.org.uk), where message boards are there for users to exchange views and experiences.Please feel free to contact us.Kind regardsTom McLoughlinCF Patient AdvocateWest Midlands Adult Cystic Fibrosis Centre (Ward 26)Ist Floor New Medical UnitHeartlands HospitalBordesley Green EastBIRMINGHAMB9 5SSTel: 0121 424 1632Fax: 0121 424 1661
Hi Sunny, when you have no one around that understands it must be very hard. I wanted to suggest a wonderful group to connect to people with CF online. Try http://groups.msn.com/groups/cysticfibrosis2chat even though the people there are mostly North American and European, they will welcome you with open arms and make you feel right at home.Andrea
Hi SunnyIt must be really hard for you coping with Cf alone. I live in London and my partner has CF. His name is John and he is 34. If you ever need to chat or have any questions, feel free to email me anytime. I hope the internet helps you know you are not alone. cazegan@msn.comCazze
Hi Tom, Thanks for your kind mail.Yes I do make regular trips to Royal Brompton Hospital every year. Climate here is hot, but so far thank god i have not faced dehydration as i am normally always in air-condition rooms.Re current infections, yes this is what i am faced with as everyother month i am on cirpo for 2 weeks. Thanks for the website address i will get myself connected there. Kind Regards.Dalvir Singh
Hi Tom, Thanks for your kind mail.Yes I do make regular trips to Royal Brompton Hospital every year. Climate here is hot, but so far thank god i have not faced dehydration as i am normally always in air-condition rooms.Re current infections, yes this is what i am faced with as everyother month i am on cirpo for 2 weeks. Thanks for the website address i will get myself connected there. Kind Regards.Sunny Singh
Hello Sikh; I live in lebanon and i have CF, i wonder how do you afford to pay your treatment abroad because i face the same difficulties getting the medications which i dont get at the end, so CF has got the better of me. I dont think you are alone there are many asians with CF but they remain undiagnosed and eventually die . I wasn't diagnosed until late so it is a diagnostic problem. You can talk to me at ramiuefa@yahoo.com Rami 21 w CF
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just wondering if there are any other people with Punjabi or close background that post on this site as people with CF or family with CF??