18.12.08

::APA ITU IgAN::

Ni ler nama penyakit aku ni igA N. Secara rumusannya buah pinggang aku bocor. Semua protein + darah kuar melalui air kencing. Ini lah yg menyebabkan sistem imun badan aku lemah. Lebih kurang mcm antibodi tu mati / tak aktif la. So, aku akan cepat letih + lemah. Walaupon aku kene selsema + demam skit pon, badan aku akan tenat. Sebab takde antibodi yg dpt lawan penyakit tu. Penyakit aku ni tak boleh dihilangkan pon. It's just that skang ni aku makan ubat utk melambatkan proses kerosakan kidney aku je. Skang ni pon doktor dah siap bgtau aku. Maybe dlm masa 10 tahun je lagi kidney aku akan rosak teruk. Sakit aku ni nak ilangkan kene tukar buah pinggang. Tp tu buat bila end stage nanti. skang kidney aku 20% rosak. Sampai masa nanti aku kenelah buat cyclone (ntah camne ejaannye ntah). Masukkan ubat waktu pagi, petang tu kuarkan balik. Dialisis tu maybe buat kalau protein dalm kencing aku 4+ dalam jangka masa yg lama. skang ni protein aku kejap 3+, kejap 2+. masa aku tak sihat protein aku 4+...so, kesimpulannya aku ni seolah2 pesakit HIV la..takde antibodi. Sengau je sore aku ni. Nak nyanyi pon dah kurang sedap. (kurang ok..bukan tak sedap)..tu je!
What IgAN is IgA nephropathy
(or Berger's Disease, IgA nephritis) is an immune complex disorder (or immune-system mediated disease) which causes IgA immune complexes to be deposited and trapped in the glomeruli (the filters in the kidneys), where they cause inflammation (called glomerulonephritis), proliferation of cells in the mesangial matrix, and eventual scarring of the glomeruli (called glomerulosclerosis).
Some of the scarring may be caused by inflammation, some simply by the lumen of the glomeruli (the part the blood goes through) gradually and eventually being squeezed and closed-off by the expanding mesangial matrix (the mesangial matrix can be thought of as the structural support for the tiny clump of miniature blood vessel which is a glomerulus). Once blood cannot flow through the lumen of a glomerulus, this glomerulus becomes non-functional, and is from that point on essentially just non-functional scar tissue. There are about one million nephrons in each kidney (each nephron consisting of a glomerulus and other associated parts), and as a person gradually loses functioning glomeruli, overall glomerular kidney function decreases. Glomerular kidney function (or more precisely, glomerular filtration rate, abbreviated as GFR) is what kidney patients commonly know as % kidney function, as in, "I have 30% kidney function". Eventually, the person "progresses" from having mild IgA nephropathy to having chronic renal insufficiency (loosely defined as being a GFR under 50%), and at some point, if and when the GFR reaches down to about 10% kidney function, the person will need to be started on some form of renal replacement therapy (dialysis or kidney transplant).
Is it an autoimmune disease? Well, it depends on how we define autoimmune. It is not an autoimmune disease in the classic sense of that term, but it does involve the immune system. IgA nephropathy is probably most accurately described as a circulating immune complex glomerulonephritis in which there is glomerular trapping of predominantly IgA immune complexes. It is a common misconception that having IgA nephropathy somehow goes hand in hand with a weakened immune system. There is very little evidence to suggest this is the case. IgAN patients who have a particularly "weakened immune system" may have it for other reasons than the IgAN.
IgAN is one of a group of kidney diseases which are sometimes referred to as glomerulonephropathies, or simply, nephropathies - hence the name IgA nephropathy. IgAN is thought to be the most common type of glomerulonephritis. Despite this, IgAN is not the most common cause of end-stage renal disease. According to some estimates, IgAN accounts for about 10% of end-stage renal disease cases. However, in my experience, you can go to many dialysis centres and never encounter another IgAN patient. The majority of dialysis patients seem to be there because of diabetes or hypertension, and the statistics certainly do bear out this observation.
A very variable disease, it can present as an acute or a chronic form of kidney disease, and in some cases it can be rapidly-progressive. The majority of patients have the less aggressive chronic form, which may or may not progress to end-stage renal disease (esrd) over many years (10 to 25 years or more). In the small number of patients who have the rapidly-progressive form, it can lead to esrd within 5 years or less. At present, there is no cure for IgAN. Some people have mild cases which progress very slowly, with long periods of relative stability (which may even be perceived as a "remission"), and some have more aggressive cases which progress to chronic renal insufficiency and to end-stage renal disease more rapidly. Why it is more aggressive in some than others is simply not known, although it is safe to say that, as far as is known, it has nothing to do with what the person eats or doesn't eat, or with anything a person does or doesn't do. This author suspects that adult who has IgA nephropathy would eventually reach end-stage renal failure if the person lived long enough (that is, didn't die of old age or other causes first). However, IgAN in children may be an exception, because it does appear to be relatively benign once the more acute proteinuric phase passes (either on its own, or with medication). There isn't currently much data about what happens to these children later in adulthood.
IgAN is suspected when protein and blood (visible or not) are found in the urine, and is ultimately diagnosed by biopsy. While IgAN can be suspected from the symptoms a person has, many kidney diseases have similar symptoms to varying degrees, and a definitive diagnosis of IgA nephropathy is not currently possible without a kidney biopsy. Sometimes, a firm diagnosis of IgAN is not even possible from a biopsy, if the biopsy is done only when the patient is already in an advanced stage of chronic renal insufficiency.
IgAN can affect people of all ages, but it is most commonly diagnosed from adolescence until about the age of 40, and it is thought to be three times more frequent in males than in females. Pediatric IgAN may appear in childhood to adolescence (and into the early 20's) in its more acute presentation.
If you or your child has been diagnosed with IgA nephropathy, you will find that, as time goes by and the disease progresses (which could easily be a decade or more, if it progresses at all, that is), and enough kidney function is lost such that the patient gradually moves into chronic renal insufficiency, it becomes less and less a matter of having IgAN, and more a matter of having chronic renal insufficiency (also referred to as chronic renal failure). Nephrology is a medical specialty which essentially treats the symptoms of chronic renal insufficiency, and which provides ongoing renal replacement therapy (dialysis, kidney transplant). It is not really involved with other parts of the body, so, don't expect your nephrologist to act as your primary care physician, nor to deal with aches and pains and other problems elsewhere in the body unless they are clearly a symptom of chronic renal insufficiency (such as swelling of the feet due to fluid retention, for example).
It's important to realize that, if a person has chronic renal insufficiency or, eventually, end-stage renal disease, it doesn't really matter much at that point which specific kidney disease caused it to happen. What is being treated then is really the chronic renal failure or the end-stage renal disease. However, it can become relevant again once a person has had a kidney transplant, because it is possible that the IgAN will recur in the transplanted kidney to some extent (although in most cases, the kidney is more likely to be lost due to acute or chronic rejection than because of recurring IgA nephropathy).
IgAN patients have been looking for years for some sort of causal connection they might share with others, a clue as to why or how they or their child developed this disease. The truth is, there doesn't seem to be any particular connection. People have considered allergies, things they may have been exposed to, foods, occupations, blood types, etc. So far, hundreds if not thousands have not been able to identify any such link. Billions of people eat, millions of people have allergies all of all kinds, everyone in the world is exposed to various things, millions are vaccinated, and yet, only a very few develop IgA nephropathy. In the meantime, having IgAN has to be dealt with, perhaps with nothing at all or only blood pressure medications if the IgAN is mild, perhaps with oral steroids if proteinuria is significant, and maybe other immune system suppressing drugs if the IgAN is aggressive enough to warrant the risks. Even people with apparently very mild, very slow IgAN, no troublesome "flare-ups" of visible blood in the urine and only mild proteinuria can and do eventually run out of kidney function due to the on-going progression of this chronic kidney disease - even though this may take decades. This author, the website and its associated email group do not have any magic bullets, no homepathic or naturopathic products, no special diets that can cure IgAN. We only try to inform other patients as best we can, filling in the blanks in the information they receive from their nephrologists, and we help them deal with the real world situation of having this disease without being consumed by it.

20 comments:

shimazahar said...

alamak... bahas inggeris laa plak.. tak per tetap aku gagahi membacanya... hehehehe..

kak cian ko kak ek... teruk betul penyakit ko nie... tetiba orang teringat plak macam cerita INTAN dekat astro channel 105....

habis tu kak dalam 10 tahun kalau dah makin rosak .. camana.... (mungkin nie soalan bodoh kot..heheheh)

oYa said...

sepatah haram aku tak paham/...pesal tak bahasa korea terus wakakaa

ai said...

SHIMA,
kau bukak la kamus. aku nk translate pon x reti. dah nama pon aku ni sakit kronik..mustilah teruk. (pala hotak aku pon dah kronik gak ni..kahhhhhhh)

dlm 10thn lagi maybe aku kene buat dialisis. Kalau teruk sgt kene buat pemindahan le. errkk..nak buah pinggang kau boleh? kalau tak boleh, buah dada pon boleh la...

ai said...

OYA OLALA,
la..kan dah aku simpulkan kat atas tu ha...kang aku letak bahasa tamil kang.

Grow2g3th3r said...

Betullah shimazahar... macam dalam citer INTAN.. malam tadi tengok citer INTAN, terus teringat kat ai ni...

Apa2pun, Ai ni lagi kuat semangat dari INTAN tu.... tak pe ai... walau teruk @ kronik pun penyakitnyer... semuanya urusan ALLAH...KEAJAIBAN pasti akan wujud...

happy2 selalu kay...

ai said...

GROW yg bukan GRO,
alamak..aku x penah lak bukak criter tu. Criter endon kan? nnt aku nk tengok gak arr..

~ kebetulan family aku mmg panggil aku INTAN pon :P

Ibu Mifzal Arsyad said...

kak ai...aku tumpah sedih pasal kesihatan kak ai..kalau boleh nak kak ai yg kiut miut ni sihat sentiasa..aammiin..

saveme_zero said...

kak ai...moga ko akan terus sihat sentiasa k. bahasa german tu aku tak paham la..hahahha

green apple said...

memula aku nampak tajuk ko the word glomerulus dah masuk lam kepala. Sekali scrolled down a bit, ecehhh betul la pulak.

masih boleh ingat notes...takde la tua sangat aku kan...(tetiba je, apa kaitan ntah)

~~ciklinn~~ said...

erm..linn sedih la... kesianlak linn baca cite akak pasal penyakit tu.... so dlm masa 10 thn lagi buah pinggang akak kena tukar lah yerk....
semoga akak tabah yer..(hishh aku lak yg emo kak ai ok jer)

hehheeh yg atas jer baca..hok bawah inggeriss da.....

ai said...

AINEY BAMBAM,
ye aku tau aku miut...motif?? :P

SUSU MASAM,
tu dah paling simple la yg aku pilih..Bahasa German kau dapat brape ni??!!

DI si POMPUAN SENGAL,
eh..sapa kata kau tua? mana ade tua!!!!MUDA lagi la wei! ~sebaya

CIKLINN budak sekolah,
sib bek ada aku translatekan skit kt atas..wakakakakaka

Anonymous said...

Salam,
saya ade sakit cm akak juga..
susah nk cari pesakit yng sama..lagi2 kt malaysia nie...kalau nk cari kt internet nie..english jelah..

A.I said...

SALAM, TULER. ADA GAK FORUM UTK PESAKIT2 CAM KITA NI. TP OVERSEA PUNYE LA. TENSION JE LAYAN DOWANG SBB DOWANG TU TERLALU DOWN SGT SMP ADA YG RASA PENYAKIT NI CAM HIV PULAK. isk. AKAK PON DH LUPA LINK FORUM TU. hehe..SKANG NI ADIK STAGE BAPE?

Anonymous said...

hmm..
stiil at stage 1..alhamdulillah..dpt detect awal....but haritue cek doc..creatinine in blood naik sikit...maybe deyhrated..so this sept cek lagi..hope xde pape..dah 3 tahun...

A.I said...

tuler. payah nk ckp bila dpt sakit cam kita ni. imun rendah. antibodi lemah. senang je sakit lain hinggap. akak ni dah lali ngan demam. kadang tu x tau pon demam sbb pening mmg selalu. bila gi cek ngan doc skali tgk rupanya suhu tinggi. selsema mmg sentiasa la (nyanyi pon x sedap sbb sore sengau :P) akak harap creatinine kau turun blk sbb bahaya kalau tgg. nnt kene cuci kidney..huhuhu..semoga idop kita sesama dipermudahkan olehNYa..amin.

Anonymous said...

salam

akak saya skrg dalm pemeriksaan doktor dan diletakan di bawah pesakit igA nephropathy. sya sendiri pun tak tahu ape die tu. tp saya rasa doktor tu maybe silap pasal sebab saya rasa sihat.

tapi ader banyak perkara yg saya nak tahu coz saya xfaham especially apa yg doktor2 tu try to do.

bolehkan saya nak berkongsi dengan akak sedikit sebanyak pengalaman pemeriksaan rawatan perubatan yg akak dah lalui? pleaze help me..so confuse.

my email: wanas_86@yahoo.com.my

Anonymous said...

salam.. sy pn br kene penyakit ni..emm memg konpius mula2.. dpt tau ble bt medical checkup.. hehe kerja dh dpt tp ble dpt tau ada penyakit ni trus x dpt keja..xpelah yg pnting bnasib baik dpt tau di peringkat awal..

Anonymous said...

Hai, saya baru dapat penyakit ni last year. Tak decide lagi nak ambil rawatan. Doktor bg prednisolone (streoid) tp takut dgn kesan sampingan, You all ada ambik rawatan ? Ok tak?

Anonymous said...

halo there...may i suggest you...
take some herbal medicine to heal your kidney... first of all pls check your gut...if it is leaky ... heal the leaky gut first... consume probiotic... and use suplement for increase your metabolic...
check up your fungal and bacteria in your body ....
do some diet ...
i hope it will help you...

ceritera hidup.. said...

SALAM,
hye, sye pown ada penyakit mcm akk gak..tp skang sye dah dialysis dah..sbb 1st detect dah stage 4 tahun lpas, mcm2 dah doktor buat nk kurangkan risiko kidney tu dr rosak, sye pernah buat kidney biopsi 2x, masuk ubat cyclo 4 kali n ada satu lg treatment cuci component darah (lupe lak ape nama treatment tue..) tp x jalan pown sume tue.. so akk skang dialysis jer sambil tggu ade yang nak donate kidney..

klik klik (^_^)