...Recent findings in genetic research have suggested that a large number of genetic disorders, both genetic syndromes and genetic diseases, that were not previously identified in the medical literature as related, may be, in fact, highly related in the genetypical root cause of the widely-varying, phenotypically-observed disorders. Thus, PLD is a ciliopathy. Other known ciliopathies include primary ciliary dyskinesia, Bardet-Biedl syndrome, polycystic kidney disease, nephronophthisis, Alstrom syndrome, Meckel-Gruber syndrome and some forms of retinal degeneration.. Read full entry
This entry is from Wikipedia,the leading user-contributed encyclopedia.It may not have been reviewed by professional editors(See full disclaimer)
- Polycystic Liver Disease Information
- Are You Suffering From Polycystic liver disease?
- top-health-site.com
- 1.Polycystic liver disease - Wikipedia, the free encyclopedia
- Polycystic liver disease (PLD) usually describes the presence of multiple cysts scattered throughout the normal liver tissue, in association with Polycystic kidney ...
- http://en.wikipedia.org/wiki/P
olycystic_liver_disease
- 2.Polycystic disease of the liver
- Polycystic liver disease is. genetically linked to protein kinase C substrate 80K-H (PRKCSH) ... autosomal dominant polycystic liver disease (PCLD) that ...
- http://www.uchsc.edu/gastro/do
cuments/pub_h_everson/Polycyst ic_Disease_of_the_Liver.pdf
 |
How can I find out if I have For about 11 years I've had a
cyst in my right kidney
causing it to enlarge and a
liver cyst that was once
drained during my gallbladder
removal a few years ago.The
liver cyst has filled again
and my kidney cyst causes
severe pain daily.Over the
years,I've had ct scans,mri's
and sonograms to keep track of
how large my kidney has
grown.2 out of 3
doctor's(including a
nephrologist from the Kidney
foundation)suggests I have PKD
and has told me that I now
need to undergo genetic
testing to verify this.I have
no health insurance and there
is only one income in my
household.Due to the daily
pain,I am so limited to
activities that I can do with
my two children.We are so
stressed that we cannot get an
answer from these "specialist"
and can no longer afford any
more testing or ER visits.I
feel like I am alone.How can i
get a diagnosis when i can not
afford the testing?I've been
to the"sliding scale fee"
clinics(they say my husband
makes too much money but fail
to realise we pay bills with
it).
|
|
 |
|
|
 |
Currently there is no cure for PKD, not with conventional medicine or (despite what you have been told) alternative medicine. Ultrasound (sonogram) is usually used to diagnose this especially when the cysts are active. Genetic testing confirms the diagnosis. CTs & MRIs can be used but are not ususally required. The extra imaging you have had may have been redundant and unneccessary. For now, get a hold of all your films, reports and labs -- you will need them. The main concern at this time is to prevent or control pain, high blood pressure and UTIs and well as find help. You may want to contact the Kidney Foundation and see what they suggest. Call to get an 800 number and check their website. They may have programs for someone in your situation, programs that will give you immediate help. My hope is that you can avoid ESRD (end-stage renal disease), kidney failure and transplant. I'm not certain if you are eligible for Disability or Supplemental Security Income benefits through the Social Security Administration but it's something to investigate. You would need the medical information I suggested you acquire and any written physician statements you can get concerning the probable diagnosis. If I am able to find additional help for you, a grant perhaps, I will contact you if I'm able. God bless you and your family. You're in a very frustrating position but I'm sure there are others who will try to help. You're not alone! |
|
|
|
|
* Indicates a required fieldAdd your knowledge or ask a question:
