Scleromyxoedema?Award-winning journalist Karim Sulaiman, 45, is dying at his home in Gombak. In 2000, the year before he won the coveted Hadiah Kajai for Berita Harian, doctors told him he was suffering from a rare disorder. He started suffering from migraines, high blood pressure, diabetes, difficulty in breathing, etc. "My body feels like it's on fire, Ky," he told me yesterday. From 2003, his physical appearance change dramatically. His good, boyish looks are totally gone. His speech is now slurred and he can't turn his head left or the right; if he tries to sit up straight, without support at the back of his head, his jaws will fall on to his chest. "His neck can't support his head," the wife said. She feeds and cleans him round the clock, and she also tends for their six schooling kids, the youngest is 9 and the eldest 17.
So Karim sits there on the sofa in the living room, everyday, wasting away. He used to weigh about 60 kg; now he is lighter than his youngest son. His mind is awake and alert, though. I asked him how long he's served Berita Harian. "I joined 12 December 1985. I've just completed 21 years of service. You are, what, six months my senior?" On the dot. I joined Business Times, another NSTP daily, in July the same year. Can't remember the exact date, though. "Ahmad Sebi, Nazri and Kadir interviewed me," he continued. "Kadir Jasin was garang (fierce)."
The Berita Harian special projects editor said on 9/11, the day they suspended the Weekend Mail, he was informed that the company had no choice but to place him on a 6-month's leave, to be followed by another 6 months of half-paid leave. By this time next year he will be living on Socso benefits. "If I live that long," he said. Six years on, the doctors can't say for sure what's killing Karim. I was told to google "papular mucinosis" to have an idea of what Karim is suffering from. "They told me it's an extremely rare disorder," his wife said.
Karim is not giving up hope. He says he is sure someone out there can tell him what exactly is wrong with him and what the cure is. "It's just a matter of finding that someone."
The exco of the National Press Club meets next week. We will work closely with Mior Kamarul Baid, one of Karim's ex-bosses at Berita Harian, and Pahit Manis (see his postings on Karim here and here) to see how we can be of help. We have raised funds for journalists in need before but what Karim needs now is help to find that expert who can give him the hope for a cure that he surely deserves.
I bring updates about this journalist in the days ahead. And I hope they'll be happy updates.
i'm a medical student and i've seen one case of this in 4 years. it's very rare, but i'm not sure about the prognosis. in the UK, it is treatable, i am surprised that the mentioned person is in so much pain. however, it is another reason for us to be here, to make sure we take the positives of medicine here, and bring it back for the benefit of malaysians.
ReplyDeleteall the best for the person mentioned.
You give the impression that your friend has tried just about everything, hence why not give Haji Lah Lubok Tapah, Pasir Mas, Kelantan, a chance. He doesn't charge nor expect anything. Don't expect miracle, however. Call up your friend Anuardi. He should be able to arrange for something through his (*powerful*) Kelantan connections.
ReplyDeleteHow professional rivalries/jealousies can take an ugly turn. Too often I have seen this sort.
My salam to your friend, and have a nice day.
Rocky must be joking if he expect Datuk Hisham to care for Karim! He has a lot of work! And I read your comment in PahitManis about Wahab! You certainly don't know our inHuman Resource Director! Encik Wahab will only go visit Karim to accompany Tuan Datuk Syed CEO, that is if the CEO got the time to go. Classic bootlicker, Encik Wahab. But good for Karim he got Datuk AhmadT and Rocky to blog on him. InsyaAllah, something good will come Karim's way. Kuatkan iman, teguhkan ibadah .. ini dugaan Nya.
ReplyDeleteI used to work with Karim at BH. Gem of a guy. I am very sad to read of this unfortunate situation he is in. I pray that he will find a remedy to this extremely complicated case. Brother Karim, stay strong, for He works in wonderous ways...
ReplyDeleteRocky, thank you for the update. Karim was one of the family of Malaysian journalists in London and I remember him as a very hard working journalist.
ReplyDeleteI hope you have conveyed our salams to him. Insyaallah there will be something. Taufiq is going home on 24th dec.
rocky, i don't know karim but as a fellow human being let's give him the moral and financial support.
ReplyDeleteif you
ReplyDeletewant to
sms to this number
0174387371
just insist on you tell your story
and don't ask him who he is.
whatever asked
do it if you can
if no say so.
As an ex NST journalist, I feel sad for an ex colleague of the same organisation.
ReplyDeleteHR Wahab...don't you think you people should be doing something more concrete for him.
Or you want the CEO to go visit him, so you can accompany them and get your bloody pix in the papers.
Come on man, he has six school going children.
Where is your Corporate Social Responsibility, NST/BH?
Do something concrete. Do some fund raising, I will chip in.
MMB
NST published it today here:
ReplyDeletehttp://tinyurl.com/y4z3ax
Editor with rare disease promised help
I hope to bring you some good news, on the doctor who may offer some help.
ReplyDeletePlease call me on 012-2280168
cheong cm
Karim is a member of our scleromyxedema Support group at scleromyxedema.net He has been kind enough to share with us some photos and his story. I haven't heard from him in awhile I hope he's doing well. I'm from the USA and we have a Lady from England in our group. We are all receiving IVIG infusions as the main treatment of this disease. It seems to be working out well as most of us are living normal lives. Many of us are patients of Doctor Hummers at St John's Hopkins's hospital in Maryland (USA). If there is anyone out there looking for help or support with this disease Please join us at scleromyxedema.net. My best wishes to Karim. I hope we hear more from him soon.
ReplyDelete