To Tanzania with Love | The Laurita Spina Bifida Project wants to donate wheelchairs

“How sad it is that we give up on people who are just like us.” — Fred Rogers (“Mr. Rogers”)

I don’t really remember what it’s like not being able to walk. As parental anecdotes recall, I was about two years old when I took my first steps. My parents were overjoyed, of course, but probably more than most parents, because I have spina bifida. According to my doctors at the time, I wasn’t supposed to be able to walk.

I may not remember what it was like crawling around the house or not being able to stand up, but, at age 30 now, I am beginning to grasp what it means to have limited mobility. My knees and back hurt constantly, and my wheelchair is getting much more mileage than it used to.

As I recently learned through a good friend I’ve never met, there are people in Tanzania, and in many other countries, who do not know the privilege of owning a wheelchair— what a blessing it is to have the equipment to facilitate mobility.

Little did I know until these past few weeks, that there are people on the other side of the world who would give anything to have the freedom I am often complaining about— the freedom to move.

That’s why my non-profit organization, The Laurita Spina Bifida Project, has offered to help the Association for Spina Bifida And Hydrocephalus Tanzania (ASBAHT) by raising funds so they can purchase wheelchairs, walkers, crutches, and a prosthetic leg for a young girl with spina bifida.

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Image courtesy Sifa Sylvia, ASBAHT 

A shifting perspective

It really gives me pause to reflect on how grateful I am for my “inconveniences.”

Over there, where my friend lives, people aren’t griping because someone took the accessible parking space. Or because their wheelchair won’t fit in their friend’s car when she offers to give me a ride.

They don’t complain about these problems because they don’t exist. Because access to the mobility devices they need doesn’t exist.

Many moms of children with spina bifida and hydrocephalus must push their children in strollers instead of carrying them. If they don’t have access to the brain surgery to have a shunt placed, the children’s heads grow until the parents can no longer carry them. Even these strollers are very hard to come by. As for me, I am only vaguely reminded I have a shunt in my head when the weather changes and I feel a slight headache.

This holiday season, I am fully committed to making the freedom of mobility a reality and not just a dream for at least several people in the Tanzanian spina bifida community…people who are much like me.

Maybe this will make a huge, life-altering difference for them. Maybe it won’t. All I know is, everyone needs someone in their life who refuses to give up on them.

I have you guys. Now, it’s my turn to be that person for somebody else.

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Image courtesy Sifa Sylvia, ASBAHT 

How you can help

What we need, first and foremost, is monetary donations. Whether it’s $5 or $500, every dollar makes a big impact when you add it all up. Trust me on this! How incredible is it that for the price of a latte macchiato you bring us one step closer to giving a deserving human being the gift of mobility?

 

Here’s a rough estimate of what each item costs, in U.S. dollars:

• Wheelchairs – $140.00 each

  • Walkers – $70.00 each

• A prosthetic leg for a youth with spina bifida – $460.00

Other ways to help out

If you own a company or know of a company or organization that might be interested in partnering with us to help raise the funds, please reach out to me at laurita.tellado@gmail.com. I truly believe “it takes a village,” and you are all my shining example of that!

Consider this campaign for your company’s end-of-year charitable contributions. Every donation is tax-deductible.

Also, since there are just so many wonderful social good campaigns during this time of the year, we need your help with getting the word out. Please, post to Facebook, Tweet, share, blog, Pin, Instagram post, etc.! There is truly no action that is too small to make a difference.

Please share / post using the hashtags #TheLSBProject , #SpinaBifida, and #Give5ToThrive (because we want to encourage that no amount is too small!).

Keep up with this campaign by following and connecting with us on social media:

The Laurita Spina Bifida Project on Facebook

@TheLSBProject on Twitter 

@TheLSBProject on Instagram

Remember what it’s all about

Finally, keep in your mind and heart that we are doing this to pay it forward. We have been so Blessed throughout this entire process, and I’m grateful for each and every person who has been part of The Laurita Spina Bifida Project’s journey thus far.

In the words of my friend Sifa of Tanzania, the angel behind-the-scenes who has put me in contact with the ASBAHT: “It will be an honor for ASBAHT to partner with you or any other organization or individuals out there with the heart to help the forgotten children, youth, and adults living with SBH in Tanzania.”

Thank you, Sifa. We’ll do our best.

Love,

Laurita ♥

My Actual Letter to the Mother who Aborted her Baby with Spina Bifida

 

A note to my readers: 

Recently, I received an E-mail from a mom who contacted me for advice. She had a pregnancy affected by spina bifida, and at the recommendation of her doctor— she chose to abort. In addition, she wanted my advice on how NOT to have another baby with spina bifida. As you might have read in my previous post, I felt the entire gamut of negative emotions upon opening and reading that E-mail— anger, sadness, judgment towards her, and just an overall sense of melancholy that seemed to pervade my emotions for several days. 

In a desperate attempt to sort out my thoughts, I took to the only place I felt I could safely share my heart— this blog

 

CamelMeme

 

 

The backlash was almost immediate. I expected there would be pro-choice advocates (I am still very much on the fence in the abortion debate— so don’t ask me) who would argue that she acted on her rights. Really, I anticipated that. 

What I didn’t expect was the anger and vitriol that spewed, even from moms of children with spina bifida who know me personally. I was accused of not being a good advocate because a good advocate “doesn’t think of her own feelings.” 

How is it even possible to do that!? I could never put my own feelings aside, for it was my own feelings that helped me become an advocate for the spina bifida community. It is my emotions that fuel my passion for activism and education. I could never turn off my emotions. That is just absurd. 

However, I also was not prepared for the outpouring of love, support, and encouragement from many friends and followers who applauded my article. They felt it was a good tribute to how many parents of kids with spina bifida— and adults with SB, especially— feel when they come across stories like these. I will be forever grateful especially for these people, for they buoyed my spirits up during one of the most challenging times I’ve encountered in my 5+ years of blogging. 

What a difference four days makes! 

After a few days away from the circus (really, it was ridiculous!) I decided to finally reply to this woman with a clear head and lighter heart. I’ve also been physically sick with various illnesses which have had me very preoccupied. 

So, without further ado, this is what I actually said to her— verbatim, raw, uncut, no edits. And it was from the heart. 

 

Dear _____________,

Thank you so much for contacting me. I can’t imagine how difficult it must be to contact someone with spina bifida after losing a baby with spina bifida.

First, let me say I am very saddened and sorry for your loss. However you lose a baby, it is heartbreaking and it must be so difficult. I admit, upon first reading your E-mail, I was quick to judge you. I felt angry that you did not want to have a baby with the condition that I have, as if having spina bifida means that my life is not worth living. This is why I did not answer you immediately. But after much thought, crying, and praying, I have come to realize that there are many like you who do not have the information they need to make this decision. I know for a fact that many doctors put pressure on mothers to have an abortion when spina bifida is diagnosed.

I have lived with spina bifida my whole life, but I have never been a mother, so of course, my advice is based on what I know from having spina bifida myself.

But, I receive many E-mails from mothers who are pregnant with a baby with spina bifida, and many who have children with spina bifida.

Let me start by saying that there is no way to guarantee that you won’t have another child with spina bifida. Nobody can promise you that.

Sadly, there has not been much research or information about spina bifida until recently. Honestly, the only way to guarantee that you won’t have a baby with any disorder or disease is to not get pregnant. A B-vitamin called folic acid has been shown in recent years to help prevent a child from having spina bifida, but even if you take it as recommended by a doctor, it only works about 70 percent of the time. So, that is not going to promise you a baby without spina bifida.

Here is the link to some information about folic acid published by the March of Dimes, a wonderful organization that helps prevent birth defects and support families of children affected by birth defects: http://www.marchofdimes.org/pregnancy/folic-acid.aspx

Finally, because you seem very determined to not have a baby with spina bifida, the final piece of advice I can think of offering you is this: if, by chance, you do end up having another baby with spina bifida, please know that it is NOT a death sentence, or a tragedy. 

I have met many, many families who have children born like me, with spina bifida, and who, like me, grow up to be happy, successful, even healthy adults. Yes, they sometimes go through many surgeries or other medical complications, but most can grow up happy and make friends, and as adults, get jobs, go to school, and even get married and have their own families. I have played with many children with spina bifida I have met through these families, and they are absolutely beautiful and precious, and very smart and active.

It is possible to have spina bifida and live a happy, healthy life. 

I work as a blogger, writer, and social media professional. My work has taken me to different places, as I am often invited to speak at events and conferences around the United States. I have connected with adults with spina bifida and families all over the world who reach out to me for advice or simply to know that someone else understands.

I do not mean to say that I never get sick or feel pain, because I do. I have had 19 surgeries and many, many hospital visits. My family has been through a lot, and it is not easy. Pain is a part of life, and even “healthy” children will get sick, get hurt, and suffer at some point. Every parent feels their job is to take away their child’s pain, but like my parents have done with me, their job is to stand by me, to hold my hand when I am having a hard time. They are my best friends and love me so much.

So please don’t think that having spina bifida means I have had a horrible life. Thank God, I live a wonderful life and I feel grateful for every minute of it.

I hope this serves to encourage you, no matter what doctors say, no matter what others say to you, to be the best mom you can be for your child, whether he or she has spina bifida or not.

That’s all you can really do.

 

May God Bless you and please contact me if you want to talk some more. I am here.

Laurita

 

To the Woman who Aborted Her Baby with Spina Bifida

 

Dear Woman,

First off, let me say that I am not writing this on an impulse. In fact, I have given this a lot of thought and have decided to give this situation a “grace period” in which I could cool off, reflect, cry, pray, gain perspective from others in your situation, and allow myself enough time in which to answer you without anger or bitterness.

Of course, this time has allowed me to be more merciful and fair to you. But please know that I needed this time as much as you did. It’s not easy to for me to process my emotions about an issue that is so personal to me.

But, you E-mailed me asking for advice and answers. After choosing to terminate your pregnancy of a child with spina bifida, you want my advice, my insight, my wisdom, on how to have a “healthy” baby.

How’s this?

I have nothing to offer you. No advice, no answers, no wisdom, no tips, no magic crystal ball to predict what your next child will be like. 

My first instinct, upon reading your E-mail to me, was to hate you. After all, you managed to break down wall after wall of cautious, precarious illusion of self-esteem that I have spent 28 years painstakingly building. And for 28 years, it has worked for me.

 

Mami_baby

My Mami when she was about eight months pregnant with me. I am my parents’ only child.

 

When I first began blogging five years ago, I was moved by the many moms who contacted me. Most have had children with spina bifida, and some were pregnant with a baby with spina bifida, and wanted advice on how to handle the birth of a child with “special needs.” Or maybe they wanted solidarity; just the notion of knowing someone else out there in cyberspace can relate. I was elated at the idea of being able to help these women; give them a glimmer of hope for what the future held for their children. I offered them my friendship and unconditional support, and in return, I have been rewarded many times over by their reciprocity, their encouragement in my difficult times, and their genuine happiness at my triumphs.

Then I opened your E-mail. It’s as if five years’ worth of fortresses of support and encouragement from these moms and little white lies I told myself quickly eroded around me. I was exposed. Vulnerable. You shattered my illusion of invincibility.

I built a community of support and encouragement, of sharing knowledge along with the good, the bad, and the ugly about spina bifida. Women all over the world contact me to thank me for simply sharing my story, trivial as it may seem to many. Because the story of my normal yet fulfilling life gives them hope. It helps them to know their children can aspire to this.

And yet, I cannot help you, because you aborted your baby. You cut the common thread we would have shared. Now all I see is a large, dark chasm between us, because I am nothing like you. 

No, I am that child with spina bifida, the one you chose to abort. I look in the mirror, and I see the life that was discarded because it wasn’t deemed worthy of living.

And you ask me for advice because you don’t want your next baby to turn out like me.

And I am angry beyond words. Because in spite of all I have accomplished in my life, no one wants to have a child like me.

Not even my own mother would have wanted that. But she did.

 

Mami_me_crawling

I was about 18 months old in this picture. Whether or not Mami envisioned having a baby with spina bifida, she and I have always been thick as thieves.

 

And that, plain and simple, is what frightens me the most. That maybe, just maybe, your story and my mother’s are not all that different. You each won the lottery that no one wants to win.

I wish you well…and maybe next time, take a second glance at your lottery ticket.

Join Me in Getting Covered #TakeCareChat

Disclosure: This post is part of a campaign with Ad Council and Get Covered America. I will be compensated for publishing this post and for participating in the Twitter chat. All ideas and opinions are my own. 

 

If there’s someone who truly understands the value of having good health insurance, it’s me– trust me. I certainly wouldn’t be here without the vigilant care of many good healthcare providers and nurses, and there were times in my childhood when I was literally in and out of the hospital every other week.

Sadly, more than 1 in 6 Americans don’t have health insurance.

This is mostly due to one of the following reasons:

  • They don’t receive coverage from their employer 
  • They cannot afford coverage
  • They were previously denied coverage because of a pre-existing condition

 

Under the new Affordable Care Act, people cannot be denied health coverage because of a preexisting condition.  This is fabulous news for me, having spina bifida and hydrocephalus! Thanks to the ACA, insurance companies can’t turn me away because of that. 

I feel very blessed and fortunate to have access to good healthcare, and I don’t wish to take that for granted for a single second. But, if you’re not willing to take my word for it, perhaps you’ll listen to this adorable menagerie of pets who have a message for you:

 

 

What’s more, most people will have to pay a fine if you don’t enroll in healthcare up by March 31st. The 2014 fine is $95 for an adult or 1% of a person’s income, whichever is greater. (The fine is $47.50 for a child, and a family can only be fined up to $285.)

I’ll be joining Ad Council and Get Covered America TOMORROW from 1 to 2 p.m. E.T. during a Twitter chat where you can learn more and ask questions about getting covered. Be sure to follow @GetCoveredUS on Twitter and Tweet using the hashtag #TakeCareChat to participate in the conversation!

 

Parrot

In the meantime, you can visit GetCoveredAmerica.org to find out how you can enroll in health insurance, and to get answers to some frequently asked questions about the process. There are also some pretty awesome tools on the site, like the Get Covered Calculator, which can help you discover how much assistance you could qualify for to help pay for your insurance coverage.

Figuring out how to navigate the ins and outs of the ACA can be daunting, especially since it’s so crucial to your health and to the health of your family. But with the proper tools and resources, you’ll be enrolling in no time– and hopefully by the deadline of March 31st!

 

–Laurita

My Sin of Omission

DuctTape

 

Yeah, it’s been a while, to say the least.

I spent the last few hours posting photos, status updates, and responding to Tweets about an event I attended in Orlando, and which I plan to write about on my other blog.

Earlier tonight, I put on my casual-dress-professional-cold-weather attire and was present at an exclusive preview tasting at a chocolatier.

I sipped great wine, ate fine chocolate, and mingled with friends, old and new.

We exchanged lighthearted conversation about our blogs, and weighed in on other recent events many of us have attended.

I exchanged hugs, social kisses, and sincere thanks to the people who hosted and invited me.

And I did it all with the utmost sincerity. Of that, you can be sure. 

No one knew that, for about a week, I’ve been dealing with a persistent, painful bladder infection that has me cringing every time I pee (a.k.a. “self-cath,” but whatevs. Peeing is peeing.).

No one probably imagined that, every night for the past three nights, severe bladder cramps have kept me up late and have almost brought me to tears. (Well, not really close to tears– but only because I have a pretty high threshold for pain. I’ve grown “accustomed” to it, if that’s even possible.) 

No one could have known that, just this afternoon, I was on the phone several times with my urologist’s nurse, scheduling what will be my first appointment in years with him. I’ve been in a urology limbo of sorts, because he is a pediatric urologist, and while technically, he is supposed to see patients until they turn 21, I am a “special case,” because I have spina bifida and an augmented bladder. He performed my bladder augmentation surgery– my most invasive and dangerous procedure to date– when I was 10, and I trust him with my life. 

Indeed, no one, save for my parents, would have known any of this, because, simply put, I haven’t talked about it. 

And why would I talk about it?

Since the holidays, I’ve been to numerous blogger events, celebrated birthdays, weekday happy hours, workshops, and the like.

My posts on Facebook have often been the trigger for playful, harmless jealousy. Friends often comment, wishing they had my life. From what I usually post on my Facebook profile, I can’t say that I blame them. By all accounts, I seem to lead a pretty fabulous life. 

I’ve got news for you, though.

Everyone omits on Facebook. 

Yep, that’s right. From the bitchiest posts to the statuses that are downright inspiring, we are all guilty of carefully vetting and considering the content that we post on our social media profiles. 

Why would anyone assume I am an exception? 

In fact, if anyone has good reason to filter her output, it’s me. 

Because my girlfriends don’t want to hear during our ladies’ night out about how my urine stinks of ammonia and looks as murky as swamp water.

Because, as bloggers, while we all over-share to an extent, no one wants to hear at a professional gathering of social media influencers how Miralax isn’t doing the trick for me just yet.

Because, God forbid I should choose the joyful family Christmas dinner in Puerto Rico as the venue for disclosing how I’ve totally slacked off on my neurosurgery stuff and am now desperate to schedule a follow-up with my neuro to find out the results of my MRI, which I had done before the holidays.

Because God forbid I be more human than people can actually bear. 

Unsurprisingly, the issues I just described above (and many more) are very common topics of discussion on many of the private online groups and forums I’m a part of that pertain to life with spina bifida.

You might find it odd, but I actually don’t share too much in these groups. Don’t get me wrong– I’m eternally grateful for the love and support many of these people show me and others with spina bifida. I’ve forged many great friendships with parents of children with SB, and with adults with SB, all over the world.

I guess that I don’t feel the need to share everything about the spina bifida part of my life with them. Heck, they majored in this, as did I!

But I want to share it with you. 

And I want to be able to share honestly and openly with you– without any of the following responses that I’m dreading right now, and that I always dread:

1. Pity. Please, absolutely NO “I’m sorry you have spina bifida” talk. It makes me feel as if you believe that living with spina bifida is pitiful and shameful. And trust me– I don’t need that. 

2. Discomfort, awkwardness, squeamishness. I’m sorry if I slip up during lunch and casually mention I have to go cath. Usually I say “pee,” but occasionally I will slip up and make some allusion to the fact that I use a plastic tube to urinate. Obviously, I overlooked the fact that you are not as used to this as I am, and any remark that you make along the lines of “ew” and the like will only make you come across as a jerk. Please, grow up and get over yourself. Call me when your pee is prettier than mine.

3. Holy talk. You know what I mean here. I consider myself to be a religious/spiritual person with my own faith and personal relationship with the Creator. And if you say you’ll pray for me, I’ll gladly accept your prayers, good vibes, etc. But please don’t attempt to make yourself feel better about my ailment by saying that “everything happens for a reason.” It’ll upset me, and will only serve to make me wonder why this “everything” doesn’t seem to be happening to you. 

Simply put– I don’t expect everyone in my life to relate to my struggles, anymore than you might expect me to relate to all of yours. If you can’t relate to the situation, that’s perfectly fine. I think admitting you can’t understand what it’s like, is actually the first step towards putting yourself in another person’s shoes.

The ugly truth about life is that permanent chronic conditions like spina bifida can’t be cured, anymore than you can bring your deceased loved one back from the dead or force the cast of F•R•I•E•N•D•S to do a reunion.

It’s just not going to happen like that.

We all go through difficult, challenging, brutal stuff. So from here on out, I promise to try to level with you. I’ll try to be honest.

Are you willing to try to listen?

 

“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.”   –Albert Camus 

 

Can Beauty Sense Trump Genetics? ALLERGYFACE™

This post is part of a sponsored campaign on behalf of Latina Bloggers Connect and the makers of ZYRTEC®.

 
People say you can’t escape your heredity, your genetic fate.

 

Years ago, my parents told me the story of a conversation they had while they were still dating. Both Mami and Papi were prone to severe allergies, and their relationship was already heading towards marriage.

 

“You know,” said Papi, “When we have a child, he or she is going to be extremely allergic.”

 

“That’s true,” Mami said, in response to his observation. “Pobrecito.”

Ever since I can remember, I’ve been plagued by my genes– both a product and a victim of a genetic predisposition to allergies. Both my parents are prone to both seasonal– and year-round– allergies, as is my grandmother. Indeed, noses “run” in our family!

When I was about five years old, I was tested to find out just how prone I might be to developing allergies. While I don’t know all the specifics, I remember my parents telling me that a score of 100 was considered “normal,” and anything above 100 wasn’t. 
 
I scored above 800. Holy moly. Indeed, my heredity had totally betrayed me.

While there is little I can do to prevent being allergic to certain things– like shellfish, or the pollen of many different trees– there’s a lot I can do to prevent allergies interfering with my life. Almost every day, especially during the spring allergy season, I take an antihistamine like Zyrtec to help alleviate some of the symptoms like sneezing and itchy, watery eyes.

But when it comes to disguising those annoying symptoms, I hardly know what to do. This is why I’m so excited to participate in Zyrtec’s ALLERGYFACE™ campaign, which has taught me a few tricks of the make-up trade to help conceal when allergies are getting the best of me.

 

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A few musts for me on an allergy-prone day are: using eyedrops, avoiding any strong perfumes, and avoiding the use of eyeliner, as it tends to bother me when my eyes get itchy.

 

Fortunately, Zyrtec has partnered with beauty and fashion expert Carmen Ordoñez of Viva Fashion blog to bring us all some great tips for disguising that dreaded ALLERGYFACE™. This will be a three-part series on YouTube.com/Zyrtec featuring the best tips for disguising your allergy symptoms.

 

Watch the video below as she takes us through some ideas to hide puffy face, watery eyes, and a red nose.

Stay tuned for the release of parts two and three of Carmen’s video series, to be distributed in the summer and fall, respectively. 

A big thanks to Zyrtec and Carmen Ordoñez (@VivaFashion) for giving us the tools and know-how to put our best face forward– even when we’re not feeling our best! Take that, ALLERGYFACE™!

 

At least that’s one victory for me in the battle against my genes! 😉

 

What’s your story about how allergies have affected your life? Do you have any tips for combating ALLERGYFACE™? Don’t forget to Tweet using the #ALLERGYFACE and #ZYRTEC hashtags on Twitter, and “like” ZYRTEC on Facebook to join the conversation.

 

–Laurita :)

 

Angels Abound in Sin City (Part 3 – Final)

Good angels are fallible … they sin every day and fall from Heaven like flies.

Anatole France, The Revolt of the Angels

 

 

Sorry, but I couldn’t resist beginning a post about “sin” and “angels” with something like that! 😉

After two weeks of getting back into the swing of things, and getting the hang of my new job, it’s finally time to get down to business and talk about what really happened in Vegas. Sure, you know all about the fabulous hotel I stayed at, and the awesome team from Vitapath Genetics that made it all possible for me.

Now, however, I must tell you about what I learned at the Second World Congress on Spina Bifida, critical, vital information that I am even now, still digesting.

 

With Dr. Timothy Brei, developmental pediatrician and SBA's Medical Director. He has spina bifida too, and meeting him, a medical doctor with SB, was by far one of my proudest moments! :)

 

So, without further ado, here are some of the highlights from the sessions I attended to get informed. While I have dealt with a plethora of physical and physiological secondary conditions related to spina bifida throughout my life, I was particularly interested in listening to what the researchers had to say about the transition to adult-centered health care in people with spina bifida, as well as psychosocial outcomes in this population.

 

*Health Issues for Latinos with Spina Bifida

  • Mark A. Canfield, Ph.D., is the Co-Principal Investigator for the Texas Center of the National Birth Defects Prevention Study. He is also the manager of Birth Defects Epidemiology and Surveillance Branch at the Texas Department of State Health Services. 
  • There are 50.4 million Hispanics in the U.S. By the year 2050, Latinos are expected to form 30 percent of the U.S. population.
  •  Where you are born can influence whether or not you have a child with spina bifida.
  • The Texas Pregnancy Risk Assessment Monitoring System (PRAMS) was a survey that analyzed pregnancy outcomes for mother and child between 2002 and 2010 based on several variables, such as maternal smoking, the mother not taking a multivitamin daily, and maternal obesity.
  • Another study analyzed awareness and use of folic acid by moms who have had a neural tube defect-affected pregnancy before. Results showed that more white, English-speaking mothers used folic acid than Hispanic, English-speaking or Hispanic, Spanish-speaking moms did.
  • Latino parents of children with spina bifida tend to report less satisfaction as parents and they also perceive their kids as more vulnerable.
  •  Parents born in either Mexico or Central America are more likely to have a child with spina bifida than their Hispanic, U.S.-born counterparts.
  • Dr. Canfield concluded that: relative to whites, Latinos are only at a “moderately elevated risk” of having a child with spina bifida; Latinos are at greater risk if one or both parents is foreign-born; Latinos are less likely to be exposed to smoke, one of the risk factors; they are less likely to take supplements; and they are more likely to be obese.

Morning view from the the 43rd floor of the Cosmopolitan Hotel, where I was staying!



*Family and Psychosocial Concepts and Concerns in Spina Bifida

  •  Dr. Grayson Holmbeck stated that children with spina bifida that come from a low socioeconomic status have a higher risk of developing behavior problems and problems with social adjustments.
  • Girls with spina bifida are at high-risk for social difficulties and a negative physical self-perception.
  • In the development of independence and autonomy, boys with spina bifida tend to lag behind the girls.
  • Children with spina bifida tend to develop more effectively if they have many positive social experiences.
  • Between the ages of 8 and 13, kids with spina bifida tend to have a very limited understanding of hydrocephalus, of the purpose of their shunts, and how it works. However, they do tend to know exactly where their shunts are located.
  • In early adolescence, there tends to be a shift in responsibility for catheterization. Usually, by age 13, the child becomes fully responsible for self-cathing.
  • There tends to be a shared responsibility in the bowel management routine between parent and child in early adolescence.
  • The results of Dr. Holmbeck’s research indicate that factors associated with success as an adult with spina bifida include high socioeconomic status, a high level of intrinsic motivation, and less interference from the mother.
  • Families in the study sample with a child with spina bifida tended to be less cohesive, and the children with spina bifida were more passive in their interactions with the family.
  • The sample of adolescents without spina bifida who matured early demonstrated more family conflict than those without spina bifida.
  • One possible hypothesis that might explain why there seems to be less conflict is that families with a child with spina bifida tend to respond less to changes during puberty.
  • There is evidence that maternal overprotection negatively affects children with spina bifida.
  • Maternal criticism was predictive of depression symptoms in the sample of youth with spina bifida.
  • During the study, researchers asked to observe youth with spina bifida while interacting with a friend of their choice. The majority stated that they didn’t have good friends or they chose a sibling or cousin.
  • Social function varies in children with spina bifida. In many cases, when a child with spina bifida nominated a peer as “best friend,” that nomination wasn’t reciprocated.
  • Researchers conclude that it’s critical to study young people with spina bifida during adolescence. The psychological problems are just as important as the physiological ones.
  • Also, children with spina bifida with a low I.Q. tend to have more parental interference.

 

Attendees listen intently during one of the World Congress sessions.

 

*Medical Issues and Preventable Conditions Among Adults with Spina Bifida

  • Adults with spina bifida and urinary incontinence are .77 times less likely to be sexually active.
  • There is no distinction in satisfaction with life between men and women who are sexually active and those who aren’t.
  • The majority of adults with spina bifida without hydrocephalus in the study began dating at 18 years of age. In adults with spina bifida and hydrocephalus, the age at which they began dating was typically 21.
  • Only 38 percent of men and 54 percent of women with spina bifida had been adequately informed by their doctors about sexuality.
  • Doctors were advised during the presentation to be professional when discussing sexuality with their patients, and not to assume that the patient knows as much as they do.
  • Researchers concluded that there isn’t much research or information about young adults with spina bifida and sexuality.
  • This next part was by far the most harrowing portion of the educational sessions. In this part of the seminar, attendees learned just how high the death rate is among adults with spina bifida who are admitted to the hospital with one disease or injury and end up contracting another disease or obtaining another injury.
  • Several disease and conditions studied include urinary tract infections, complications related to surgery, pneumonia, and infections due to ulcers.
  • The vast majority of deaths analyzed in this study were due to sepsis.
  • In the 65+ group, the majority of deaths were due to stroke.
  • 7.2 percent of the hospitalizations in the study were due to UTIs; about 2 percent were due to bacterial pneumonia.
  • The UPMC Wellness Center is dedicated to helping prevent these complications.
  • The speakers conclude that if we don’t take the initiative to prevent these complications, we should prepare ourselves for the reality that 1/3 of patients will be re-hospitalized and 1/3 of them will die.

Dr. Irene Dietz is a pediatrician specializing in developmental behavioral health and neurodevelopmental disabilities. She's awesome. :)


*Transition to Adult Health Care

  • Many adults with spina bifida reported that they want to take charge of their own health care.
  • Many adults with spina bifida say they “like” being the ones that deal with the health insurance companies.
  • Using peer mentors and greeters allow transitioning young adults to talk to other teens about their needs and concerns.
  • Feedback from teens indicates teens prefer when they can contact doctors directly themselves, instead of doctors talking directly with parents.
  •  They appreciate having someone to talk to who has been through the transition process.
  •  Transition is defined in part as the point at which the individual begins to manage their own care of the chronic condition.
  • Role negotiation with the parents over issues such as incontinence makes it a particularly stressful time for young adults.
  • The social implications of living with a “disability” and the potential for bowel or bladder accidents can make the transition period even more challenging.
  • Conclusions included: “Healthcare providers working with YASB transitioning to adulthood need to reinforce the importance of increasing self-efficacy in order to positively influence health competence. Future research should investigate the relationship between perceived health competency and self management.”

With Cindy Brownstein, SBA's President & CEO, and Christopher Vance, SBA's Director of Development and organizer of this event.

*Hal Pote Memorial Lecture (given in memory of the late Hal Pote, who founded the Spina Bifida Foundation in 1987 and passed away in 2007)

  • Father-son published author team, Scott T. Price and Pat Price, shared lessons about the innate goodness of human nature while traveling cross-country, interviewing everyday people for their book, Looking for Goodwill. These two were among the most inspiring people I met during World Congress. There doesn’t seem to be an ounce of negativity in them, and you can tell by listening to their stories that they consciously seek out the best in everyone they come across. Scott and Pat traveled almost an entire year, visiting each state, and searching for the best that America had to offer.
  • Scott and Pat shared anecdotes from their book about how they interviewed strangers at random about the good things they have done. Each stranger they came across was handed $10 and they asked him/her to do something “good” with it. The gentlemen also read aloud to us letters they have received so far from the strangers telling them what they did with the money. Their responses show that many of them made life-changing impacts on other strangers.
  • This father-son initiative to interview strangers across the country, and inspire them to do good for others, truly inspired me in a very “Pay It Forward” fashion. Pat and Scott are a remarkable example of how people both inside and outside of the spina bifida community are all capable of effecting positive change.

I truly hope my adventures in Las Vegas did more than simply create lasting memories for me. I hope this opportunity for me serves as yet another opportunity to educate people about spina bifida and maybe even give people within the spina bifida community a better insight of what exactly it is that we’re all fighting for.

I met so many amazing people who are equally committed to the spina bifida cause– meaning both prevention and quality of life. Certainly, these were all “angels,” each in their own way. I am forever grateful to each individual I came across during that week.

I cannot thank VitaPath Genetics enough for offering me this experience of a lifetime! If you’re not already signed up for the Spina Bifida Genetics Research Study, please do so, as either a mom of someone with spina bifida, or as a control group mom. (Adults with spina bifida– be sure to let your moms know about this!)

Also, don’t forget to “like” us on Facebook in English and/or Spanish, and to follow us on Twitter in English and/or Spanish.

For more information on the research studies that were presented at the Second World Congress on Spina Bifida, please click here

 

Love,

Laurita ♥