IMPORTANT RESEARCH BREAKTHROUGH

GO TO THIS: http://www.plosbiology.org/article/info%3Adoi%2F10.1371%2Fjournal.pbio.1001219

New Research

See this article:

Retinitis Pigmentosa Treatment: Retina Implants To Restore Sight Undergo Human Trials

http://www.scientificamerican.com/article.cfm?id=retinitis-pigmentosa-retina-implant-tech&WT.mc_id=SA_syn_HuffPo

ADVOCACY

I was reading a post on LMBBS about one of the kids being treated rudely by medical staff who had trouble getting an IV started "because she's so fat". That really upset me, as I'm sure it did for most of the people who read it.

LMBBS patient advocacy needs to continue the hard work of addressing the troublesome medical staff - something an organization that I belong to for my condition (Hereditary Angioedema Type III) is having to work diligently on. 


One of my personal physicians said that even she gets treated badly by hospital docs, especially in ER. I'm hoping LMBBS, as my organization is doing, will continue to work on educating hospital administrators about compassionate care for all patients whether we come in with a rare condition that most folks don't understand, or are patients with more common issues. 

With LMBBS the medical personnel often don't have the training to understand that obesity is a part of the syndrome, and yes, caregivers are very aware of the problem, but that is not the emergent issue when going into the ER or admission to hospital. 

Unfortunately, nutritionists have not had a good track record in assisting LMBBS patients and caregivers to deal with this aspect of the condition. Obesity is the number one issue that caregivers list as a stressor in my caregivers' survey. 


I hope we can develop a working group to deal with this issue, with the goal of educating medical professionals and nutritionists, and secondly to work toward a protocol for caregivers to help the LMBBS patients with this aspect of the condition. We need assistance in developing ways to help kids lose weight and get healthier that will become a lifestyle change that is fun and not unpleasant and difficult.

I Don't Usually Post Poetry

This was sent to me by Tom Orsini, Orsini Health Care, who is my Specialty Pharmacy/Home Health Care provider for my Hereditary Angioedema, and I thought someone else might like it, too.

You are who you are for a reason.

You're part of an intricate plan.

You're a precious and perfect unique design,

Called God's special woman or man.

You look like you look for a reason.

Our God made no mistake.

He knit you together within the womb,

You're just what he wanted to make.

The parents you had were the ones he chose,

And no matter how you may feel,

They were custom designed with God's plan in mind,

And they bear the Master's seal.

No, that trauma you faced was not easy.

And God wept that it hurt you so;

But it was allowed to shape your heart 

So that into his likeness you'd grow.

You are who you are for a reason,

You've been formed by the Master's rod.

You are who you are, beloved,

Because there is a God! 

Russell Kelfer

PS

I just realized... I have 2 blogs: this one, and another for my condition: Hereditary Angioedema Type III, and my signature on that one is now used on this site... so if that seemed confusing, that's why. I'm no techno-whiz, that's for sure!

Meeting Another Parent Going Through the Diagnostic Process

My daughter and I met a lovely young mom of two adorable little girls, one appears to have BBS. I was so glad that my daughter Greta was able to talk to her about how she went about getting a diagnosis for Ian, and then to give her referral info regarding other specialists. I think this mom was able to see that the condition is hard to understand, but with good support, good medical specialists, and good schooling, BBS kids can be happy and their medical issues can be dealt with as they come along. And that although "different" BBS kids are delightful and bring so much more to us than we give to them! Experiencing the world through Ian's experience of it has taught me a lot about living in the moment, enjoying what you've got, not what you want, and that life is full of fun and funny moments :-)

I think we need a BBS support group in Omaha!

CAREGIVERS SURVEY

PLEASE TAKE JUST 5 MINUTES TO FILL OUT THIS BRIEF SURVEY, IF YOU HAVEN'T ALREADY.
Click here to take survey
THANK YOU SO MUCH!

TERESA