Born with Hep C - anyone else?

[dogmom1020]

Hi all,

I am not sure if getting answers will help me. But I was born with Hep C. I contracted it from my mother during the birthing process. She contracted it due to a bad blood transfusion several years before I was conceived. I have had the disease my whole life with no side effects – just told by specialists to 'wait it out'.

I am finally starting to get serious about getting rid of this so I can start my own family in the future with peace of mind. I have applied for treatments, but have so far been denied medication. My viral count is very low. I want to know if there is anyone else out there who contracted the disease from birth, or if there is anyone having a hard time getting approval due to a low viral count. Kind of feel like i'm on an island right now, so I hope there is someone who has a similar situation that can share their experience with me.

Thank you.

[Mugwump]

There is a member with the handle concerned father who saw his adopted daughter who was infected at birth through the treatment process.

Firstly, knowing your genotype and which treatment regime is best suited for your situation is always the first step. If by chance you are forced by the insurance industry into obtaining generics there are also those who can help walk you through that process.

From my experience it took about 40 years from initial infection for the disease to progress to F4 with genotype 1a. I also experienced many of the extra-hepatic effects from this disease over the years and at the same time fathered children who are not infected without knowing that I was infected.

I was not diagnosed with HCV until 1993 not long after viral load testing first became the available. It took most of my adult life to progress to severe liver damage. But at the same time I know of many from my generation who have died early either directly from this disease or have gone on to develop liver cancer.

Yes it is possible that you may never progress to F4 or have serious extra hepatic symptoms from this disease. But over the years I have heard of many more who suffered serious problems from this disease than those who have an acute infection and go through life with little to no effects from this disease. 

All the very best on the journey to a cure we all deserve a chance at life free from this God forsaken disease!
 

[gnatcatcher]

dogmom, during the several years that I have been active on these forums, there have been other people besides concerned father's daughter who were born with Hep C. There were also quite a few mothers who unknowingly had Hep C before giving birth but whose children didn't get infected with it.

Your specialists were right to tell you to wait -- Hep C usually takes decades before it does any significant damage, and the early medicines were hard to endure and didn't cure many people. But the new medicines are great: side effects for most people are few and mild, and cure rates are nearly 100%. Now's a good time to get cured.

If you are planning to start a family soon, most insurance companies consider that a reason to treat you even if your viral load, fibrosis score, and liver enzymes (ALT, AST, etc.) are low. If your insurance company still balks, some of the most recently approved medicines have financial assistance from the manufacturers themselves, there are people here who got financial help from a patient assistance organization, and, as Mugwump mentioned, there are generics as effective as the name brands.

Best wishes,

Gnatty