Tag Archives: Ehlers Danlos Syndrome

Pillowfort at Target: Should You Ask Your OT Before You Click Buy?

 

There are so many families out there that need great equipment for their sensory kids.  Pillowfort materials are on sale at Target, one of my favorite big box stores.  The items are affordable and stylish.  But are they what you really need?  In order to get the products that serve your child’s needs, you may want to think beyond color and style.  The key to good equipment is having a big picture plan.  The wrong item for the wrong kid is worse than not hitting “send”.

Some good examples are their crash pad and their chair.  If you have a sensory-seeking kid, you know what abuse your couch and bed can take.  Kids tend to dive bomb them and little by little, destroy them.  Pillowfort will sell you a nice crash pad, and they use a smiling child lying prone on one of their pads in their display on Target.com.

You might want to look at the dimensions.  In my professional experience, most of my clients are looking for way more square footage to crash into.  And when they are dysregulated, which is often, they aren’t going to be able to land squarely on such a small pad.  Therapists use pad the size of a thick full mattress for a reason.  We are all safety, all the time.  And we know what works.

The rocking desk chair is another nice chair that will serve a small number of kids.  It looks pretty sturdy, but the big sensory seekers can wear out hinges really easily.  A chair that rocks is a chair that can become tippy with the right (or wrong) user.  Choose this chair only if you have a child that isn’t one of THOSE kids.

There are other choices for kids that seek movement, and they aren’t chairs.  They are sensory diets, created by therapists with years of experience in evaluating and treating your child.  Read Sensory Stimulation is not Sensory Treatment and Halloween With Sensory Sensitive Kids: The (Sensory) Tricks of the Holiday for more information on how Good OT treatment can help your child.

Looking for information to help your hypermobile child with Down syndrome, Prader-Willi syndrome, or Ehlers-Danlos syndrome?

I wrote an e-book for you!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is now available on Amazon as a read-only download and at Your Therapy Source as a printable and click-able download!

This book answers all the questions you want to ask about finding the right high chairs, clothes, toilet seat, and even which crayons help your young hypermobile child make faster progress.  It has checklists and forms to help you communicate with your babysitters, your child’s teachers, even forms to improve your appointments with doctors.  Chapters on communication give you practical ideas to improve your family’s understanding of hypermobility and guide you to clarify what they can do to provide you with real support, not pity or denial.  Get it today, and start feeling more confident and empowered as a parent!

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Is Benign Joint Hypermobility Syndrome (BJHS) All That Benign?

 

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Throwing the bathwater out and keeping the baby

Many of the children I treat every year have some degree of hypermobility.  Some of them arrive on my caseload with diagnoses such as Prader-Willi syndrome or Down syndrome.  Their low muscle tone is understandable, and their hypermobility has been easily observable since birth.  Some of them are almost certainly going to be diagnosed in the future with hypermobile Ehlers-Danlos syndrome (hEDS).

There are always a few children that have been given the BJHS diagnosis without any identified genetic disorder.  Most of them have issues with delayed gross and fine motor development.  Many of them are already wearing orthotics.  Many of them struggle to communicate, demonstrating a level of instability and difficulty controlling their trunk, neck and mouth.  Few of them are complaining of pain, but most have low endurance, poor stability in dynamic positions, and use compensatory patterns to move.

So is this all that benign?  I don’t think so.

 These kids are at huge risk for cumulative and progressive joint, ligament, and muscle issues.  They are also at risk for social and emotional issues that arise from their inability to keep up with their peers and the difficulty of fulfilling the expectations of school, friends and family, as well as struggling to handle their own desire to move and grow while fighting hypermobility.  Almost all of the children I have treated with BJHS have average to above average intelligence and display sensory-based issues; sensory seeking, sensory aversion or sensory modulation.

Since therapists don’t provide a diagnosis, and doctors don’t provide most of the treatment these kids need, it appears to me that the only reason a doctor would use the word “benign” is that there is no disease process and there isn’t anything much that the standard ammunition doctors use (surgery and medication) can do for these kids.  It is easier than saying “I don’t have anything to offer your child except to refer to therapists and monitor until a problem that I CAN treat comes up”.

If your child has been given the diagnosis of BHJS, read more on this site about the effects of hypermobility, such as How To Correctly Reposition Your Child’s Legs When They “W-Sit” and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.  There are a number of additional or alternative diagnoses that these kids eventually receive, including EDS.  If you are a parent, learn as much as you can about related diagnoses and discuss these with your therapists and doctors.  But don’t assume that what your child is experiencing is benign.

Looking for more information on raising a hypermobile child?

I wrote an e-book for you!  The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years is my newest book.  It explains how to navigate all the self-care challenges such as selecting high chairs, booster seats, clothes and even how to make your home safer while allowing your child more independence.  It builds your ability to communicate with teachers, therapists, your family, and even doctors!  Read more about it here: The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

This unique book is available as a read-only download on Amazon or as a click-through and printable download at Your Therapy Source.  YTS is also bundling both e-books together for a great deal!

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Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue?

 

vincent-van-zalinge-752646-unsplashTherapists see lots of hypermobile kids in clinics and schools.  I see hypermobile children  every week in their homes for private sessions, consultations and ongoing treatment through Early Intervention.  My estimate is that at least 25% of kids over 5 and almost 50% of the younger kids I have treated have some degree of hypermobility.  But young children are naturally more flexible than older kids, and there are other diagnoses that include hypermobility.  What would cause  a therapist to suspect a rare CTD when so many children have this one symptom?

You observe the systemic signs and symptoms that could indicate an HDCT, and you ask their parent(s) for details about their health and activities.  You will need far more information than you can get from your intake evaluation to explore the possibility of a heritable disorder of connective tissue.

Here are a few of the more common current or past indicators of a HDCT:

  • Multiple joint involvement.  Not just lax hands, but laxity at many joints, both small and large at times.
  • Skin that is either very smooth, very thin, or bruises easily, and bruises in places that are not common sites for active children.  For example, shins and dorsal forearms are commonly bruised in play.  The medial aspect of the thigh and the volar forearm, not so much.  It is not uncommon for ER staff to incorrectly suspect abuse when they see this pattern, so be aware that as a mandated reporter, you have to ask more questions before you make that call.
  • Sensory processing issues that are primarily poor proprioception, sensory seeking and perhaps poor vestibular functioning.  Children with a HDCT may have no sensory sensitivity and no modulation issues, and good multi-sensory processing.  Why good?  The more information they receive, the less the impact of poor proprioceptive input makes on performance.  With good positioning and support, their sensory issues seem to significantly disappear or are eliminated Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior.
  • Lower GI issues or incontinence issues.  These kids may have more toilet training problems and more issues with digestion than your micro-preemies at ages 4 or 5.  Girls may have a history of UTIs, and both genders can take a long time to be continent all night Teach Kids With EDS Or Low Tone: Don’t Hold It In! You may hear about slow GI motility or a lot of sensitivity to foods that are not common allergens in children.
  • Dental issues such as bleeding gums or weak enamel.  Remember, if it is a CTD, then there will be problems with many kinds of tissue, not just skin or tendons.  Read Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health for more practical ideas.
  • Strabismus or amblyopia are more commonly seen in HDCT.
  • Really slow progress in therapy, even with great carryover and a solid team.
  • Recurrent injuries from low-impact activities that were well-tolerated the day before.   Micro-trauma can take a day to develop into pain, swelling or stiffness.  You  could see overuse trauma that doesn’t make sense at first, because the overuse is just regular levels of activity but for a CTD, this IS overuse.

Should you say something to a parent?  I don’t have a license to diagnose children, but I may contact their referring physician if I see many indications that a child needs more evaluation.  More directly, I can help parents manage the issues that fall within my practice area, and educate families about good joint protection, equipment choices, and body mechanics.

 If a child does have a HDCT diagnosis,  the current and future risks of certain sports and careers should be discussed with families.  As therapists, we know that early damage can contribute to significant impairment in decades to follow.  Just because a child isn’t experiencing severe pain now isn’t an indication of the safety of an activity.  Understanding the many ways to adapt and adjust to ensure maximal function and maximal preservation of function is embedded in every OT.  Adapt your treatment protocols to respect the nature of a CTD, such as in  Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?

We can make a difference for these kids and their families, but only if we know what we are really treating.

Are you a therapist looking for clinical guidance?  Visit my website tranquil babies and connect with me through a phone or video session.  With over 25 years of pediatric experience, I have probably tried all of the techniques you are considering, and treated children with the diagnoses that keep you guessing.  Make your treatment sessions more productive, and your treatment day easier, with some professional coaching today!

Are you a parent of a child with a CTD?  Or an adult with a CTD?  A coaching phone/video session may answer your questions about diagnosis and treatment, and help you craft a more successful home program.  This is not the same as a treatment session, but especially if you are getting private therapy services, you want to be an informed consumer and get targeted help from your healthcare providers.  Coaching can help you be that effective parent or patient.  Visit my website tranquil babies and get started today!

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Have a Child With Low Tone or a Hypermobile Baby? Pay More Attention to How You Pick Your Little One Up

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Carrying and holding kids is such a natural thing to do.  But when your child has hypermobility due to low muscle tone, joint issues or a connective tissue disorder, how you accomplish these simple tasks makes a difference.  Your actions can do more than get them from one position or location to another: they can build a child’s skills, or they can increase the risk of damage by creating excessive flexibility or even accidentally injure a child’s joints.

How could something so simple be both a problem as well as an opportunity?  Because hypermobility creates two issues that have to be addressed:  Less strength and stability at vulnerable joints, and less sensory feedback regarding pain and position sense in your child.  The ligaments, tendons, muscles and joint capsule at every hypermobile joint are more likely to be damaged when excessive force is placed on them.

Knowing how much force is too much isn’t easy without some instruction from a skilled therapist.  Depending on your child to react quickly and accurately to accidental stretch or pressure by crying or pulling away isn’t a good idea.  Their excessive flexibility reduces firing of receptors deep within all of these tissues in response to excessive force.  You may have looked at your child’s shoulders or ankles and think “That looks uncomfortable.  Why isn’t she fussing?”  This is the reason.  It means that you will have to be altering your actions to reduce the risk of harm.

As I mentioned earlier, this is also an opportunity.  It is an opportunity to teach your child about safe movement and positioning, right from the start.  Even the youngest child will pick up on your emphasis on alignment, control and safety.  They are always listening and learning from you every day, so incorporate effective movement into your handling and help your child build awareness and independence today!

Here are some strategies for you and your child:

  1. Always spread the force of your grasp over their body, and place your hands on the most stable locations, not the most flexible.  Lift a child through their trunk, not by holding their arms.  If they cannot steady their head, support it while you lift.  If you feel those little bones in their wrists and ankles moving under your grasp, support those joints instead of pulling on them.  Not sure how to do this correctly?  Ask your therapist for some instruction.
  2. Do not depend on a child’s comfort level to tell you how far a joint should stretch.   Think about typical joint movement instead.   If their hips spread very wide when you place them on your hip, think about holding them facing forward, with their knees in line with their hips, not pressed together.
  3. Give them time to move with you.  Those over-stretched muscles are at a mechanical disadvantage for contraction.  This means that when you tell a child to sit up, you have to give them time to do so before you scoop them up.  They aren’t  being defiant or lazy (I have not, in fact, ever met a lazy baby!).  This is a neuromuscular issue.
  4. Discourage unsafe movements.  Some children find that overstretching their joints gives them more sensory feedback.  It feels good to them.  This is not OK.  You will not be able to stop them every time, but they will eventually learn that their is a right way and a wrong way to move.  Knowing why isn’t necessary.  Yet.  Teach them to respect joint movement and use things like graded joint compression and vibration (your occupational therapist should be able to help you with this) to give them the sensory feedback they want.

Still concerned about safety?  Read Teaching Safety Awareness To Special Needs Toddlers  and  Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way to learn more methods to build independence without injury.

 

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Three Ways To Reduce W-Sitting (And Why It Matters)

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Children who sit on the floor with their thighs rolled inward and their calves rotated out to the sides are told that they are “W-sitting”.  Parents are told to reposition their kids immediately.  There are even garments like Hip Helpers that make it nearly impossible to sit in this manner.  Some therapists get practically apoplectic when they see kids sitting this way.  Not me; I prefer to be a stealth ninja therapist: create situations in which the child wants to reposition themselves.

I get asked about W-sitting no less than 3x/week, so I though I would post some information about w-sitting, and some simple ways to address this without aggravating your child or yourself:

  1. This is not an abnormal sitting pattern.  Using it all the time, and being unable to sit with stability and comfort in other positions…that’s the real problem.  Typically-developing kids actually sit like this from time to time.  When children use this position constantly, they are telling therapists something very important about how they use their bodies.  But abnormal?  Nah.
  2. Persistent W-sitting isn’t without consequence, just because it isn’t painful to your child.  As a child sits in this position day after day, some muscles and ligaments are becoming overstretched.  This creates points of weakness and instability, on top of any hypermobility that they may already display.  Other muscles and ligaments are becoming shorter and tighter.  This makes it harder for them to have a wide variety of movements and move smoothly from position to position.  Their options for rest and activity just decreased.  Oops.  And they don’t feel uncomfortable in that position.  If you aren’t hypermobile yourself, you might not believe me.  Here is an explanation:  Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way.
  3. Sitting this way locks a child into a too-static, too-stable sitting position.  This appeals to the wobbly child, the weak child, and the fearful child, but it makes it harder for them to shift and change position.  Especially in early childhood, developing coordination is all about being able to move easily, quickly and with control.  There are better choices.
  4. A child who persistently W-sits is likely to get up and walk with an awkward gait pattern.   All that over-stretching and over-tightening isn’t going to go away once they are on their feet.  You will see the effects as they walk and run.  It is the (bad) gift that keeps on giving.

What can you do?

Well, good physical and occupational therapy can make a huge difference, but for today, start by reducing the amount of time they spend on the floor.  There are other positions that allow them to play and build motor control:

  • Encourage them to stand to play.  They can stand at a table, they can stand at the couch, they can stand on a balance disc.  Standing, even standing while gently leaning on a surface, could be helping them more than W-sitting.
  • Give them a good chair or bench to sit on.  I am a big fan of footstools for toddlers and preschoolers.  They are stable and often have non-skid surfaces that help them stay sitting.  They key is making sure their feet can be placed flat on the floor with their thighs at or close to level with the floor.  This should help them activate their trunk and hip musculature effectively.
  • Try prone.  AKA “tummy time”; it’s not just for babies.  This position stretches out tight hip flexors and helps kids build some trunk control.  To date, I haven’t met one child over 3 who wouldn’t play a short tablet game with me in this position.  And them we turn off the device and play with something else in the same position!
  • If your child still wants/ needs to sit on the floor, fix their leg position without risking damage to their hips and knees.  Read How To Correctly Reposition Your Child’s Legs When They “W-Sit” for more details.

For more strategies for hypermobile kids, take a look at  Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.

Looking for More Information on Hypermobility in Young Children?

I wrote an e-book for you!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is my newest e-book, filled with strategies to help parents understand the complexities of hypermobility and find answers to their everyday problems.  Learning how to help a child sit for a meal, get dressed, bathe and hold a crayon isn’t intuitive. Trying to figure out how to teach your babysitter or mother-in-law how to hold and carry your hypermobile child or how to give them a bath safely?  Parenting manuals don’t cover this, and your child’s therapists might not know how to help you either.

This book gives parents the information they need to feel empowered and confident!  There are even chapters on how to improve communication with a child’s siblings and the extended family, with babysitters and teachers, and even how to speak with your doctors to get results.  My book contains many of the techniques I have learned in my 25 years as a pediatric OTR and great ideas that parents have taught ME!

This unique e-book gives parents helpful information to make everyday life better.  

It is available on Amazon as a read-only download, or on Your Therapy Source as a printable and click-able download.  Buy it today!

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For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps.

 

chen-hu-664399-unsplashI ran across a comment piece online that recommended parents teach their hypermobile  children to “listen to your body” to pace activities in an effort to avoid fatigue, pain or injury.  My reaction was fairly strong and immediate.  The sensory-based effects of hypermobility (HM) reduce interoception (internal body awareness)  and proprioception/kinesthesia (position and movement sense, respectively).  These are the  main methods of “listening” we use to know how we are feeling and moving.  For children with HM, telling them to listen to their body’s messages is like telling them to put on their heavy boots and then go outside to see how cold the snow is! 

Relying primarily on felt senses when you have difficulty receiving adequate sensory feedback doesn’t make…..sense.  What often happens is that kids find themselves quickly out of energy, suddenly sore or tripping/falling due to fatigue, and they had very little indication of this approaching until they “hit a wall”.  They might not even see it as a problem.  Some kids are draped over the computer or stumbling around but tell you that they feel just fine.  And they aren’t lying. This is the nature of the beast.

I am all for therapy that helps kids develop greater sensory processing (as an OTR, I would have to be!), but expecting HM kids to intuitively develop finely tuned body awareness? That is simply unfair. Kids blame themselves all too easily when they struggle.  What begins as a well-meaning suggestion from a person with typical sensory processing can turn into just another frustrating experience for a child with HM.

What could really help kids learn to pace themselves to prevent extreme fatigue, an increase in pain and even injury due to overdoing things?

  1. Age-appropriate education regarding the effects of HM.  Very young children need to follow an adult’s instructions (“time to rest, darling!”), but giving older kids and teens a medical explanation of how HM contributes to fatigue, pain, injuries, etc. teaches them to think.   Understanding the common causes of their issues makes things less scary and empowers them.  If you aren’t sure how to explain why your child could have difficulty perceiving how hard they are working or whether they are sitting in an ergonomic position, read Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for some useful information.  You could ask your child’s OT or PT for help.  They should be able to give you specific examples of how your child responds to challenges and even a simple script to use in a discussion.  Explaining the “why” will help children understand how to anticipate and prepare for the effects of HM.
  2. Consider finding a pediatric occupational therapist to teach your child postural, movement and interoceptive awareness, adapt your child’s learning and living environments for maximal ease and endurance, and teach your child joint protection techniques.  Occupational therapists are often thought of as the people that hand out finger splints and pencil grips.  We are so much more useful to your child than that narrow view!  For example, I have adapted desks for optimal postural endurance and decreased muscle tension.  This has immediate effects on a child’s use of compensations like leaning their chin on their hand to look at a screen.  OT isn’t just for babies or handwriting!
  3. Pacing starts with identifying priorities.  If you don’t have boundless energy, attention, strength and endurance, then you have to choose where to spend your physical “currency”.  Help your child identify what is most important to them in their day, their week, and so on.  Think about what gives them satisfaction and what they both love to do and need to do.  This type of analysis is not easy for most kids.  Even college students struggle to prioritize and plan their days and weeks.  Take it slow, but make it clear that their goals are your goals.  For many children with HM, being able to set goals and identify priorities means that they will need to bank some of their energy in a day or a week so that they are in better shape for important events.  They may divide up tasks into short components, adapt activities for ease, or toss out low-level goals in favor of really meaningful experiences.  Can this be difficult or even disappointing?  Almost certainly!  The alternative is to be stuck at an event in pain, become exhausted before a job is completed, or end up doing something that places them at higher risk for injury.
  4. Help your child identify and practice using their best strategies for generating energy, building stamina and achieving pain-free movement.  Some kids with HM need to get more rest than their peers.  Others need to be mindful of diet, use relaxation techniques, wear orthotics regularly, adapt their home or school environment, or engage in a home exercise program.  Learning stress-reduction techniques can be very empowering and helps kids think through situations calmly.    Sports can be an issue or they can be a wonderful way to build endurance and body awareness.  Read  Should Your Hypermobile Child Play Sports? for some ideas on managing pain, endurance and coordination.  Creating a plan together and discussing the wins and failures models behaviors like optimism and resourcefulness.  Children depend on adults to show them that self-pacing is a process, not an endpoint.

Looking for more information to help your child with hypermobility?  Take look at The Hypermobile Hand: More Than A Strength Problem and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.  My e-books on pediatric hypermobility are coming out soon!  Check back here at BabyBytes for updates.

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Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues

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It is graduation time here in the U.S.  Kids (and parents) are thinking about the future.  But when your teen has chronic health conditions, the future can be uncertain and the decisions more complicated.  I know that the saying “Do what you love and you won’t have to work another day of your life” is very popular, but the truth is that career planning is much more than finding your passions.

Here are a few things to think about:

  1. Every teen needs to learn about their interests and their skills.  Regardless of medical concerns or limitations, picking a career path that doesn’t match any strong interests is a plan almost certain to fail.  It’s not just that doing what you are drawn to feels good.  There is a medical reason to pick a career that they don’t hate;  if the greatest part of the day or week will require them to do tasks they dislike or find boring, they are at risk for stress-related flares in their condition. Similar concerns exist when a career choice doesn’t match their skills.  Loving what you do but not having the right skills or talents is very frustrating.  It could be harder to get and keep a job without good skills.  Help your teen identify what interests them about life and school, and where they truly shine.  If your teen hasn’t had a chance to observe people working in the profession(s) they find interesting, make sure that they do so before they invest time and money in training.
  2. Look at potential careers with an eye to benefits, job demands and scheduling flexibility.  Most adults with chronic health conditions want to be employed, and every one of them will need health insurance.  In the U.S., that means finding a job that provides insurance or purchasing individual coverage after aging out of family policy coverage options at age 26.  Generous sick days and personal days are perks every employee desires, but for people with a chronic illness, those benefits allow for medical treatments and rest during periods of symptom flares.  The NYT has written about the fact that insurance isn’t total assurance that chronic illness won’t create major stress ,but insurance is essential.  Think carefully about the working environments common to a particular career path.  Some careers will have a high-stress pathway (i.e. trial attorney) but also less demanding types of work within the profession.  Other careers require a high degree of physical stamina and skill.  These may not be the jobs you would think of right away as physically demanding.  For example, preschool teachers and hairdressers are on their feet most of the day, every day!
  3. Career planning and completing required training while living with a chronic and possibly progressive condition may require outside support.  Teens that have been able to perform in high school without any compensations such as 504 plans may need more help in college.  Higher education often expects more independence and more mobility (think large campuses and internships) from students.  Most universities have an office for disabled students. Their staff will work with students with disabilities to create a plan, but it is the student’s responsibility to inform the office of specific needs and to develop strategies with the staff and faculty.  If your teen doesn’t want to be “identified” as disabled, this is the time to talk about being proactive and positive.  Finding assistance and receiving effective support could make all the difference.
  4. Explore local and online support groups.   Adults with your teen’s medical issues may have useful strategies or tales of caution that will help you develop a plan or expose problems that you haven’t anticipated.  Remember that personal stories are just that: personal.  Experiences are quite variable and it is difficult or impossible to  predict another person’s path.

For a book that can help teens with the big transitions and the small challenges, check out Teens With Chronic Illness Or Disability Need A Good Guide: Easy For You To Say.  This book will be a great resource for life issues big and small.  If you or your child isn’t a teen any longer, read “Life, Interrupted” by Laurie Edwards.  She speaks about her challenges with a serious respiratory illness, but the issues regarding school, work, relationships and acceptance are all relevant.

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