Tag Archives: women

No Beans About It.

20 Jul

Fantastic article on G6PD Deficient patient diet suggestions.

I am a person with G6PD Deficiency (and female so I got my mutations from both genetic parents, which is a little more rare as far as probability goes, but not as rare as once believed.) I am raising a son with G6PD Deficiency and doing my best to not have him endure the oxidizing damage due to contraindicated substances that I have endured in my lifetime. I am hoping that by spreading the word and correct information regarding G6PD Deficiency that awareness will smother ignorance and stupidity that seem to come into play all too often.

Historically, it has been considered a disorder mostly of everyone but white females (and men, but men have been more widely studied and they only need one affected X to be fully deficient…) Women, need mutations on both x’s (one from each parent) to be considered deficient so we are less likely to be fully deficient, and more likely to be partially deficient, meaning we have one x with the affected gene instead of on both x’s. Once upon a time, the term carrier was used but the term partially deficient is coming into vogue as for many women, due to the particular variant or due to lyonization, it is a more accurate description. Of course, as is the case with many disorders that are believed to either include or exclude a particular gender, race, or geography, it is revealed that the excluded race or gender was never really studied, due to many circumstances, but it really is starting to look like an unfortunate tradition that has killed and injured so many people just because they didn’t fill the prejudicial mold and were believed to be categorically exempt or that it was an incredible rarity.

As it turns out G6PD is not as rare as once believed, particularly in females. G6PD Deficiency is one of the top 5 genetic disorders of pre-natal origin causing 26% of global common birth defects.

It is real and it goes beyond avoiding fava beans. The website G6PDDeficiency.org is a phenomenal resource on many aspects of G6PD Deficiency, including handy lists of contraindicated medications (don’t assume your doctor knows what is safe. Check and double check. I have found that a good pharmacist is worth their weight and seem to have a better knowledge of contraindications, but still I would check and double check and check again for good measure.

The article/page I have linked to, below, offers an excellent rundown of how we do need to be vigilant about what we put in our bodies, as there are different degrees of deficiency just like there are over 400 identified variants of this particular enzymopathy.

Why G6PD Deficient Patients Should Avoid Legumes.

I’ll post more about our experiences living with G6PD Deficiency as I get around to it. Awareness does seem to be growing in the USA. I was thrilled to see that the writers of the USA Network’s “Royal Pains” included a female patient they eventually diagnosed with Favism/G6PD Deficiency. I was even more excited when they suggested testing her young daughter due to the hereditary nature of the disorder. It was really fantastic to see awareness of this disorder and that it can impact females, as well, raised in entertaining “Royal Pains” fashion. Pretty great.

PLEASE PLEASE PLEASE consider signing the petition over at G6PDDeficiency.org.  Dale Baker, the force behind the site and a lifesaver, is collecting signatures to present to hospitals and physicians to super-emphasize what all of us know, that routine newborn screening will save lives.  It will take you just a minute, but it can save lives and make all of our communities healthier.  After you sign, or even if you don’t sign, please consider tweeting a link to the petition or this blog post.  Awareness is powerful.   Thank you. 

G6PD Deficiency Newborn Screening Petition
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Tendencies, Traits, Talents: Aspergirls

26 Mar

Below is a link to an excellent list of characteristics, abilities, and talents of females with Asperger’s Syndrome.  This doesn’t, and shouldn’t, serve as diagnostic criteria or as a rigid checklist.  It is, however, a wonderful start to a female profile that may guide identification and disgnosis someday.  Some people have told me, “You can’t have Asperger’s! You are a girl!”  I’m not the only Aspie female who has heard that, or some variant of disbelief regarding this very specific label many of us have struggled whole lifetimes to locate, so we can access the tools we need, so we can be understood, so we can understand…

Well, like many myths and stereotypes, this one is unfortunately heard quite frequently by women, girls, and parents who are looking for answers so that they can find the information and tools to be the best they can be and lead fulfilling lives.  I don’t think females are less likely to have Asperger’s or be Autistic, but I do know firsthand that many of us are not identified in a timely fashion.  Of course, I also saw myth and stereotype delay my son’s diagnosis, so it’s not isolated to one gender but I do think it’s more prevalent for a few reasons (these are written with more of a focus on parents and children, but can apply to an adult as well. I did not include tailored descriptions below, for ease of reading.)

1. Perpetuation of Stereotype/Myth

2.  Inadequate updating/continuing education of professionals who provide triage to those inquiring with concerns about their child’s development.

3.  Some behavior typically described as “autistic” is more acceptable (historically) in girls than boys.  Thankfully this is changing, but the remnants of “ye olde gender stereotypes” still hang about like a thick, slippery fog.

4.  Lack of mindfulness & dismissal of parental concerns, by professionals, because of the perception that a simple, casual inquiry equates to the parent being a stifling, growth suppressing “helicopter parent”.  I’ve known a few moms who were scolded by their physicians for just asking questions about autism and their child.  It’s like the obsession with healthy parenting and healthy development and the concerns about “hovering”, perpetuated by those tireless soldiers of the mommy-wars, has become more of a concern to professionals than identifying legitimate concerns and addressing them in a mindful manner.   I worry that the obsession about “over parenting” does damage to first time parents and children.  We are all trying to figure it out.  We are all works in progress.  I think those that under parent and neglect their children are a greater worry, but it’s easier to criticize the parent that actually comes into the office with a concern than the one who doesn’t bring their child in and who doesn’t share their concerns with the physician.

It just worries me, bothers me, angers me, that one can still go to a specialist who will look at your child and say “but your kid doesn’t act like Rainman!”…  I’ve brought prints of the diagnostic criteria with us to educate where we find outdated information.  I do what I can.  I do this because I hear all too often of delayed diagnosis, missed disgnosis, and parents who won’t let the label be given because of myths, stereotypes, and misperceptions about what it means to be Autistic, in this era, in this country, and in our society.

We all need to stand up and spread the truth about autism, about autistics, about parenting autistics.  One extremely vital component of that is  the different ways certain traits manifest differently in males and females.

Click to go to Tania Ann Marshall’s fantastic “Moving Towards A Female Profile: The Unique Characteristics”, Abilities and Talents of Young Girls with Asperger Syndrome.

For a fantastic read on Aspergirls, please check out Rudy Simone’s “Aspergirls” at Amazon.com.  As an adult female Aspie, I found the book to be very helpful in understanding our inherent strengths.  It does offer suggestions for Aspergirls and their parents.  There is also a list which Tania Ann Marshall’s list reminded me of.  Rudy Simone’s list is more a chart comparing manifestations of traits in males and in females.

Purse safety tip…

18 Jun

Last night and today I have seen the video of the 82 year old woman in a Florida Publix store having her purse snatched, slamming her and her 80 year old brother to the ground. I think I have seen it a few dozen times. Hey, I had an early docs appointment and had some mellow rest as the sleep I should have had overnight was punctuated with kid feet (we had thunderstorms last night) and some of my ‘betes technology was beeping every hour. Fun. Anyway….

I can’t remember where I first learned this suggestion, but since I have stopped sporting a backpack diaperbag everywhere I go and have returned to a smallish bag/handbag/purse, I find that it doesn’t replace vigilance and care, but it does help a little.

If you put your bag (even a regular diaper bag could be secured this way) in the fold out seat near the handlebar of the shopping cart- simply use the seatbelt (if it is not being used for a small child) and loop it and clip it through the handles or strap of your purse and click-it closed (and if your purse closes for Pete’s sake, close it! No need to tempt anyone who might be up to no good).

It might not be 100%, but with hooligans (yeah, I said it. Call me an old lady. Go ahead. I dare you. *shaking cane in air*) afoot, it is best to take precautions to ensure the safety of you and your belongings. At any rate, even if you do fall (and hopefully are unharmed) the perp will hopefully be slowed down quite a bit by the rolling metal cart he is dragging around by a handbag.

***Of course, the cart-tie method is in no way perfect or guaranteed, use it at your own risk***

xo
Bek

Candy!

19 Jul

Candy!

Originally uploaded by CleverGirlBek

Cufflinks! Not really edible…Well, unless you are a vintage lucite and sterling silver chomping creature, I guess…

Anyway… New pieces being added over the next few days and a few old favorites revisited….

Hope everyone is well!
Giant hugs!
B

p.s. MRI came back “unchanged” since my last one- phew….good news… Of course that just means that the docs may have only been looking at my old MRI… But today I am feeling a little better and only when I move a certain way does it really kick up… So hopefully tomorrow I will feel even better….

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