Sunday, May 17, 2009

Awareness

Prostate Cancer Awareness Month, AIDS Awareness Month, World Heart Week, High Blood Pressure Month, Brain Tumor Action Week, National Stuttering Awareness Week.... If there's a medical condition or disability, chances are it has its week or month in the sun. And deserves it. But there's something more widespread than AIDS and more prevalent than any one cancer, and yet it gets just 24 hours. One day to educate people about a chronic liver disease that affects 1 out of every 12 men, women, and children across the globe. On May 19th it's World Hepatitis Day.

There's a small alphabet of different hepatitis viruses out there. Probably the one most people think of is Hepatitis A, a fairly common food borne virus that generally tends to be mild and doesn't lead to chronic illness. It's not even included in the one out of 12 number. World Hepatitis Day is highlighting those who live with chronic Hepatitis B or C. Although different viruses, both can lead to cirrhosis of the liver or liver cancer. Both are blood borne and commonly passed through used needles, sex, and from mother to child in the birth process. Hepatitis B and C are not sneezed or coughed onto someone. They're not passed through toilet seats or doorknobs. An infected person's blood has to get into the blood stream of another person. In the case of Hepatitis B, that other person, especially if they're under age 21, would likely be immunized.

One out of 12 is a huge number. It's a number that's often ignored because in most cases you'd never guess a person has hepatitis. If you think you've never met someone with chronic hepatitis, you're wrong. They're athletes, businessmen, mothers, fathers, children. They look fine. They often feel fine. They may live for decades completely unaware that a virus has taken up residence in their liver cells. The yellow eyes and bulging abdomen that people think of when they picture hepatitis happen only at the end. Seventy-five percent of people with Hepatitis B will thankfully never get to that point. They'll live long healthy lives and die of something completely unrelated to their hepatitis. That's wonderful news. But upwards of 25% may die of liver failure or liver cancer and that's far too many. The amount of research though is small. A drop in the bucket really. In this country, with an effective immunization readily available and required for all school-age children, Hepatitis B is considered a non-issue. Why spend money on something you can prevent from happening in the first place? A valid point. But what about those already living with it? It's near pandemic proportions in poor areas of Asia where mother to child transmissions are common. Yet those areas with the greatest need for a cure have the fewest resources to make it happen.

I adore a person who happens to be "one out of 12". She's smart and beautiful and active. She loves red shoes and dress up clothes and she has a virus that's scarring her liver. She is our baby and she's been a brave fighter since the day she was found as a 4 and a half pound infant in southern China. She fought to gain weight and be heard in a crowded orphanage. She was brave when she was shuffled from orphanage to foster home, back to orphanage, and then handed to people unlike any she'd ever seen before. She was brave for her liver biopsy at age 2 and only requested a red popsicle and balloon in exchange for her hospital trip. And she continues to be brave now on week fourteen of a difficult year-long treatment. She's been amazing, tolerating anywhere from 2-5 needle jabs per week either to draw blood or inject medication. Her carry-on to Mexico contained syringes, a sharps container, and a cooler of medication. Hepatitis B is a tenacious virus that doesn't go down without a fight, but there's nothing it can teach our daughter about tenacity. This is a girl who already plans to wear fancy shoes and eat lots of cake at her wedding someday and we're confident that she'll do it. And we're determined that she'll still be wearing fancy shoes and eating lots of cake at her daughter's and granddaughter's weddings too--although she may be a bit heavier and wearing more practical shoes after all those years of cake-eating!

Frankly I'm as "aware" of hepatitis as I ever hope to be. But in this time of world awareness, my hope is that the stigma and myth of hepatitis as a uncommon disease of the "fringe populations" is dispelled. This virus doesn't care if a person is gay or straight, IV drug user or preschooler. If a person has a liver, there's a hepatitis virus that would love to meet them. My daughter doesn't "have" to tell anyone about her hepatitis. Her doctor has given her free reign to participate in all normal childhood activities without any need for disclosure. We knew about our daughter's disease before we adopted her, but it's something we've never openly talked about because it's her story, not ours. Our daughter is chatty though. She said a prayer in her church primary class and asked for a blessing on her liver. She sometimes talks about her medications or her blood draws. How can we expect a three-year-old never to mention something that's so much a part of her life? But we'd hate for her to think our silence equals shame. She hasn't a single thing to be ashamed of and she fills us with pride and joy. For her, everyday is Hepatitis Awareness Day. For the rest of us, I pray that researchers can find a cure to this disease, that people will know they can hug and kiss our daughter without concern, that everyone (especially pointing a finger at China) will immunize their children, and most of all that our darling girl will someday wear fancy shoes and eat lots of cake at her wedding.

12 comments:

Queen~King~Prince~Princess said...

When she gets to her wedding ILL BUY HER the sassiest RED shoes the world has ever seen! To wear outside of the temple of course. She is wonderful and I am a big advocate of awareness as well- I was shocked to hear a mother while we were getting immunizations say 'I have no idea what we are shooting him with but I guess its a good idea!' Floored was I. If it goes into my child's body I know exactly what it is and I think a little bit of finger pointing would do China some good!

Jen Bay said...

Boldly, beautifully, and brilliantly put.

Suzanne said...

I agree with Jen. We love you sweet Cholita! And she has the perfect family to help her through this.

armouris said...

info on hepatitis here - Protect Your Child's Liver From Hepatitis and here - Curbing Hepatitis A

Bevy said...

I have Hep C and got it from 2 pints of blood transfusion in 1981 when I had my son. I found out I had Hep C in 2002. I have talked about my fight with Hep c some on my blogspot - you can search my blog for any postings I've put.
Hep C is an interesting beast and it is tenacious. I have been getting slow IV pushs of Glutathione - it's a powerful antioxidant that cleans out the body of heavy metals. It's done wonders to my liver numbers. I've posted an entry on that too. And it's very cool too as I'm feeling better ... alittle over a year I started this therapy.
I encourage you to have much hope for I don't think that one must fear this disease as it usually works very slowly. If one can steer clear of alcohol and other supplements that are hard on the liver one can live a very long life. I had a liver biopsy too. I was #2 on both inflamation and scarring. Not much actually. Even though I've had the disease for such a long time.
I live in Wa state and here's a website that may help you: http://www.nationalhepatitiscinstitute.org.
360-692-0795
Toll Free 866-902-HEPC (4372)
Also: http://www.March-on-DC.com but it's more of a vets group. They also have a group on topica - but I'm not sure how that address is and if I'll paste the right one in.
Feel free to email me if you'd like to talk. check my profile for that address.
God bless and keep hope alive - looks like your little daughter is a lovely little girl. :)

The Porter Family said...

We also have a daughter from China with the HepB virus. Our lives just wouldn't be the same without her. Sadly, China will not allow her to re-enter the country so she was unable to travel with us to pick up her little brother last fall. Some people are having amazing results treating HepB with Low Dose Naltrexone/LDN. We are going to see a CAM Dr. about it this summer. Check out the link below.
Blessings~Heather Porter

http://health.groups.yahoo.com/group/Hepatitis_Children_and_CAM_Alternatives/

akwebb3 said...

All our prayers are with her as she fights this incredible battle in her little body. Not only that she will be victorious against such a relentless opponent but that she will keep that sweet little happy go lucky spirit that she has now and will never feel hopeless because of this. We love you all and hope to see you again soon.

Kate said...

Thanks for putting in words what is on my heart today. What a wonderful post.

Shirley said...

What a brave girl you have, I just want to buy her a whole bag of red Popsicles!

Lisa said...

You did it! I love you. Kisses to Cholita from her little comrade in arms, Gracie, and hugs and hugs and MORE hugs from me to you!

Michelle said...

Thank you so much for that beautiful post. I cried through the whole post. We haven't told many people about our sons condition and your post was so beautiful, I think I've found the way. Cholita is beautiful and courageous and so are you.

Your fellow China adopter friend in UT

Darren and Julie said...

I read this post through tears, Eileen. She is a fighter, these little girls from the land far away are fighters. She will wear those fancy shoes at her wedding! Praying for you all. Thanks so much for sharing this post with all of us!