Rachel Mulvaney is the Vice President of Curvy Girls, an international support group for girls with scoliosis. You might remember that we interviewed the group's founder, Leah Stoltz, on the Scoliosis SOS blog last year - this time around, we have a Q&A with Rachel, whose scoliosis story is rather different from Leah's but no less inspirational.

Curvy Girls Scoliosis

So, Rachel - when did you first learn that you had scoliosis?

I was nine years old when my school nurse detected my curves during a scoliosis screening examination. With a 35-degree curve, bracing was immediately recommended - I wore a brace 16 hours a day for nearly 3 years. However, several months after I'd been discharged from bracing, my back pain worsened and we learned that my curve had progressed to 42 degrees.

It was during this time that my mother was doing research for the book that we were writing, Straight Talk with the Curvy Girls. We learned about a scoliosis-specific exercise called the Schroth method, and in 2010, I travelled to a scoliosis clinic in Wisconsin for an intensive two-week programme.

And how well did the treatment work?

I believe it worked very well for me. The back brace did stabilise my curves, but my scoliosis continued to progress as I was never educated on how to hold my body in an upright position without depending on my brace. It was the Schroth method that improved my scoliosis and eliminated my chronic back pain. Those scoliosis-specific exercises taught me how to strengthen my weakened muscles, maintain correction, and most importantly, live a pain-free life.

After eight months of consistently doing the exercises, my 42-degree curve reduced to 30 degrees. This was a surprise to my orthopaedic surgeon, as I was already skeletally matured. And my success did not end there - by the summer of 2013, my curved had reduced to 22 degrees.

How did you get involved with Curvy Girls?

I became involved with Curvy Girls before we even had a formal name! Twelve years ago, my physical therapist introduced me to Leah Stoltz, who told me that she wanted to start a scoliosis support group for people our age. When she asked if I would be interested in attending a meeting, I said yes without any hesitation. Several weeks later, I went to the first meeting at her home on 6th August 2006.

Tell us about the role you play in Curvy Girls today.

Today, I am proud to say that I am the Vice President of Curvy Girls. Since 2012, I have co-led and co-created our International Biennial Curvy Girls Scoliosis Conventions with Leah. I also serve as a mentor for our Curvy Girl Leaders in the New York and New England regions.

I also make myself available to educate and advocate for the Schroth method. Over the years, I have invited medical professionals (as well as newly-diagnosed families) into my home to demonstrate how effective these exercises can be for a scoliotic spine.

And what do you do in your life outside of Curvy Girls?

Outside of Curvy Girls, I work as a Care Coordinator II at Memorial Sloan Kettering Cancer Center in New York City, where I facilitate and manage an oncologists' clinic and help run our chemotherapy unit. I am also preparing to go back to college to receive my master's in Public Health. I have a strong interest in research, epidemiology and preventative care.

Has helping other people with their spinal curves helped you to come to terms with your own condition and experiences?

Absolutely - helping other girls was like a form of medicine to me. Educating families about the Schroth method helped me to discover a purpose and drive within me that I never knew existed.

Throughout my bracing years, I was told that my chronic back pain did not exist because scoliosis 'does not cause any pain'. I was one of many patients who were spoken to in this way. But after learning a programme that both validated and eliminated my pain, I was determined to spread the word. I wanted to make sure all Curvy Girl families had the opportunity to know that this treatment existed. How can we make the best decisions for our health if we don't know what all of our options are?

What advice would you give to a young girl who's just been diagnosed with scoliosis?

I would encourage that young girl to join a Curvy Girls chapter so she can see for herself that she is not alone. I would tell her about our conventions and how many girls she will meet from all around the world who are going through the same experiences she is.

And what advice would you give to the people close to them?

For family members, I would advise them to read Straight Talk with the Curvy Girls. This book includes health education, emotional support, and a dedicated section for parents.

For teachers, please show empathy and understanding of the needs she may have. Allow her to step away from her desk if she begins to feel back pain, as sitting for too long in a back brace can lead to discomfort. Excuse her from class if she needs to temporarily leave and take her brace off.

For friends, please be kind and accepting. This is a sensitive time for your friend. Offer to take her shopping to find clothes that will make her feel more confident when she wears her brace to school. You could even suggest helping her name her brace in order to make the brace a part of the friendship you all share.

Visit www.curvygirlsscoliosis.com to learn more about Curvy Girls, or follow @CurvyGirlsScoli on Twitter.

Here at the Scoliosis SOS Clinic, we treat scoliosis using a Schroth-based programme called ScolioGold therapy - learn all about it here.

The Scoliosis Life (@scolilife) is a Twitter account with more than 3,000 followers. The account's anonymous owner has lived with scoliosis for the past 8 years, and they use Twitter to share their experiences along with a plethora of useful life tips for people with curved spines.

The person behind @scolilife very kindly agreed to answer a few questions for the Scoliosis SOS blog - read on to find out all about their condition, their journey, and their advice for fellow scoliosis patients:

Scolilife

First of all, please tell us a little about yourself - where in the world do you live, and when were you diagnosed with scoliosis?

I am from Canada! I was diagnosed by my family doctor at my yearly physical when I was 12 years old. My doctor knew to check for scoliosis because it's genetic and it runs in my family.

How severe was your spinal curvature?

My curves progressed rather quickly. I was diagnosed with an 'S' curve, and both curves initially measured in the mid 30s. By the time I had surgery 5 years later, the curves had reached the high 80s.

What symptoms did you experience, and how much did they impact your day-to-day life?

Before surgery, I was experiencing shortness of breath, heart palpitations, and chronic pain. My ribs became constricted due to my curves, and my organs were so out of place that I could literally push them around. Even walking up a flight of stairs would leave me out of breath. I was hesitant to go out with friends because I never knew when a symptom would strike. There were many times in school where I would lose my breath because a slight turn caused my ribs to hit my lungs.

What treatments have you undergone since you were diagnosed?

When first diagnosed, I wore the SpineCor brace, but my curves continued to progress rapidly and I was put on the waiting list for surgery. To ensure my curves did not increase by huge increments, I was put into a Chêneau brace for the last year before surgery. I underwent spinal fusion surgery in March 2014.

How well did these treatments work for you?

For me personally, the SpineCor brace was not effective. Still, while I do have some regrets about this treatment option, the psychical and mental struggles I experienced while in this brace allowed me to grow and learn more about myself and my inner strength.

I found the Chêneau to be much more comfortable and I was pretty satisfied with it. This brace was not meant to stop my curves - by that point in my journey, my family and my doctors knew that my curves were going to increase and that surgery was inevitable. This brace was intended to keep my curves from increasing at extremely large increments while I waited for surgery, and to keep me as comfortable as possible in the meantime.

I am very open on my Twitter account about my surgery experience. My recovery was unusually long and difficult, but it has made me much stronger. Despite my long recovery, I am extremely pleased with my results. My scar looks amazing and has faded a lot since the operation. I am now much more active and ultimately more positive when it comes to my body image.

You refer to yourself in your Twitter bio as a 'spoonie' – have you found Christine Miserandino's spoon theory useful when describing to other people what it's like to live with a condition like scoliosis?

For a long time, I struggled with communicating to friends and family just how much my scoliosis affected me. Sometimes my scoliosis presents itself like an invisible illness, and people do not always understand how much a curved spine can impact one's life. The spoon theory gave me something physical for friends and family to engage with in order to truly understand my life. This theory is adaptable, people of all ages can understand it, and it doesn't matter if the person you're talking to doesn't have any knowledge of chronic illness.

It also allowed me to connect to a much larger population. I felt alone before, and even now my issues sometimes transcend those of the scoliosis community. The spoon theory and calling myself a 'spoonie' allowed me to find connections in a greater community and to help others who may have felt lost themselves.

Are there any under-publicised effects of scoliosis that you wish people spoke about more often?

I think the mental health issues that come with surgery are a large area of concern. Since my surgery, I suffer from anxiety and PTSD, and that's been hard to discuss. I am still not open about it with friends and family. I think it's important to let others know that feeling this way is normal, and that it's okay to feel like that. But it is also important to let people know that there is no shame in getting help, and no matter how small you may feel your mental health is, someone wants to listen and help you. This is a lesson I am still trying to live by and follow.

I would also like to see more discussion on pain. Too often, surgeons write off pain as something that's all in your head. My own surgeon referred me to a psychiatrist because he thought I was making up my chronic pain. I was 3 weeks post-op at the time. I think if more people shared their stories about pain, and if we increased the amount of research in this field, more medical professionals would change their views and increase and improve patient care. I think it also ties into mental health - by saying, 'yes, scoliosis can cause pain', we make people feel like their experiences are valid and let them know that they can get the treatment they need. 

I think there is a lot of room for growth, and I hope my Twitter account and my transparent views on pain and mental health help my followers feel accepted and validated.

How have your family helped you to deal with your spinal curve?

I am so lucky to come from a family that values emotions and talking about things openly. My mom has come to every appointment and is always there to debrief and talk with me openly about how I am feeling. My parents helped me stay grounded - when I was overwhelmed with emotions, they helped me sort everything out. They were not afraid to voice their opinions on treatment options, but they also let me know that it was my body and therefore I had the final say on everything.

My older sister played by far the most influential role. She was away at university on the other side of the country while I was in the midst of my scoliosis journey. She was there for me after every appointment and could always cheer me up. To my sister, who is probably reading this, thank you!

What advice would you give to people - parents, siblings, partners, friends, housemates - who are close to a scoliosis patient and want to support them?

The best advice I can give is to talk about it openly. Sometimes, we want to talk about our scoliosis and our experiences, but we might not be sure how. If you know we were at an appointment, or if you notice that we have maybe been acting a bit different than normal, it is okay to ask us how things went or if we need to talk. It shows that you've paid attention and you are trying your best to understand our journey.

It is also important to be understanding of our journey. Sometimes, we might have to say an activity causes us pain or discomfort, or maybe you said something that hurt our feelings or belittled our experiences. By telling you this, we don't mean to blame you or to make you feel bad for your actions, but to simply enlighten you so we can avoid this issue in the future. If someone you know with scoliosis says, 'I don't like going on roller coasters because it hurts my back, maybe we can try going to the movies more often', see this as an opportunity to do something new together. It takes a lot of courage for us to feel comfortable to voice these concerns with friends and family, and we do so because we genuinely love spending time with you, but we sometimes need to understand each other's needs to minimise discomfort.

Finally, what's the first thing you would say to a young person who has just been diagnosed with scoliosis?

As cheesy as it sounds, things get better. When I was diagnosed, I thought my life was over. It was the biggest deal and no matter what, everything seemed like bad news or just another complication to add to my growing list. But soon enough, you adjust to the brace. The X-rays become fun. The appointments become bonding time with your family and a great excuse to miss that class you've been dreading. Your scoliosis becomes a point of pride rather than disappointment, and you become stronger and more independent because of it.

And soon enough, you will forget what the brace felt like. Your scar will fade, the IV marks will disappear. The pain will ease and experiences will become memories. No journey is the same, and that's the most amazing and precious thing about this condition - you are unique and special and that curved spine or titanium spine can become your greatest weakness or your greatest accomplishment. Only you can decide how you will let it affect you.

Be sure to follow @scolilife on Twitter for more scoliosis advice and experiences.

Further reading:

Curvy Girls is an international support group for young girls with scoliosis. Leah Stoltz from New York started the group after sitting in on a meeting of adult scoliosis sufferers and deciding that there ought to be a similar support network exclusively for under-18s. Leah very kindly agreed to answer some questions from the Scoliosis SOS team - scroll down to read the interview in full.

Curvy Girls Scoliosis Support Group

So, Leah - for those who may not know, what kind of support does Curvy Girls provide for scoliosis sufferers?

Curvy Girls provides peer support to young girls dealing with scoliosis. What's awesome about our meetings - and the reason our organisation is so successful - is that we're entirely teen-run. When girls hold their groups, it's only girls in the meetings, so it's a safe and comfortable environment.

What treatment(s) have you undergone for your own spinal curve?

I wore a Boston brace for two and a half years, and then had spinal fusion surgery (T5-L4).

Were you pleased with the results?

I was very pleased with the outcome of my surgery and I try to talk about it as much as possible. Something I've noticed a lot is that you really only hear (and see on social media) scary or worrisome stories of surgeries not going well. For the innumerable number of cases that go well, they don't necessarily need to talk about it as much because it was easier to manage. That's one of the reasons I try to talk about my story so much: to make surgery less scary for those who are about to undergo it.

You live in the USA - how challenging is it to access effective scoliosis treatment in America today?

I grew up and still reside in New York, so for me it was very easy to get access to bracing and surgery, as well as to surgeons who specialise in scoliosis. On the other hand, curvy girls who live in more remote areas of the US might have to travel great distances to receive care. 

When doing research for our book, Straight Talk with the Curvy Girls, we found out that Europe is way ahead of the US when it comes to conservative care - scoliosis-specific exercises and 3D bracing. In 2012, there was only one place in the whole of the US that offered this treatment, and for most of us it was hours away by plane. I am proud to say that, through the advocacy of Curvy Girls, families in the US now have greater access to these conservative care options.

What is the single most important piece of advice you'd give a young person who's just been diagnosed with scoliosis?

Talk about how you're feeling! Don't keep it bundled inside. Find support - a trusted friend, a parent, a Curvy Girl. Curvy Girls has support groups all over the world, as well as an online forum, Instagram page, Facebook group, book...there are so many ways to feel supported and to talk with other girls who are going through what you are going through (or who have already been through the same things).

For the benefit of the friends and families of scoliosis sufferers, could you shine a little bit of light on the thoughts and emotions of someone who's going through scoliosis?

A scoliosis diagnosis is something that just happens to us; we feel like we don't have control over it, and sometimes it can feel like there's no end in sight. We're told to wear the brace, which is a very passive activity, and on top of that we're not even sure it will definitely help! And then sometimes we're told to wear the brace under the threat of surgery, which is a terrifying idea. I wasn't fortunate enough to know about the Schroth method prior to my surgery, but what I love about it is that it gives us a bit more control over a situation that can feel like it's out of our hands.

We understand you're looking for a new UK representative - what does this role entail, and what sort of person are you looking for?

Yes we are! The best Curvy Girls leader is one who has the desire to help others as well as themselves. She should not only want to give support, but be open to asking for and receiving it when she needs it as well. Girls with scoliosis between the ages of 11 and 18 are eligible. We provide all the support necessary to become a CG leader. If you're open to learning, we're open to teaching! Application details here.

What's next for Curvy Girls? What are the Foundation's aims for the future?

World domination! In all seriousness, we just want to make sure there's support for girls wherever they are. My personal goal is that support should be offered in tandem with any diagnosis, brace, or surgery consultation. It's easy to just focus on treating the physical symptoms of scoliosis, but there's also an emotional component that's far too frequently ignored. Curvy Girls is the emotional brace for scoliosis!

Visit www.curvygirlsscoliosis.com for more information about the Curvy Girls Scoliosis Foundation, or click here to learn about the exercise-based scoliosis treatment courses we provide here at the Scoliosis SOS Clinic in London, England.

Scoliosis (and its symptoms, such as chronic pain and reduced mobility) can have a huge impact on the lives of those affected by it. However, as many scoliosis sufferers will no doubt agree, it can make a huge difference simply to speak to other people who are suffering from the same condition.

 
Scoliosis Support
 
With that in mind, here is a list of scoliosis support groups (both online and offline) around the world. We will be updating this list periodically, so if you run or know of a scoliosis support group in your territory, please let us know via Twitter (@ScoliosisSOS) and we will consider expanding our list accordingly.

Scoliosis Association (UK)

SAUK is a nationwide support organisation for scoliosis sufferers in the United Kingdom (and their families). They provide advice and information on the condition, and aim to raise awareness both within the healthcare industry and amongst the general public. Their helpline (see number above) is manned from 9am to 5.30pm every weekday, and it allows people to phone up and receive friendly guidance and support instantly.
 

National Scoliosis Foundation

Headquarterered in Massachusetts, the NSF is a nonprofit organisation that aims to help "children, parents, adults, and healthcare providers to understand the complexities of spinal deformities such as scoliosis." They offer numerous different types of support, including early screening programmes, advocacy / awareness initiatives, and numerous informative resources for scoliosis sufferers and their loved ones.
 

Curvy Girls

 
Curvy Girls was founded in 2006 by a young scoliosis sufferer named Leah. It began as a small support group specifically aimed at children and young people with scoliosis, and it has now grown into an international success, with groups currently meeting in a dozen different countries on six continents across the globe (see list above). 
 

Vereniging van scoliosepatiënten

This Dutch-language website (roughly translated, the name means 'Association of Scoliosis Patients') hosts a wide array of informative resources for scoliosis sufferers, as well as a forum where Dutch-speaking scoliosis patients can interact with and support each other.
 

Beyond A Curved Spine

Beyond A Curved Spine is a "scoliosis awareness hub" based in Lagos, Nigeria. They aim to raise awareness of the condition while also providing financial and emotional support to scoliosis patients who need it.
 

SupportGroups.com

SupportGroups.com is a website that houses online support groups (forums) for a wide range of different conditions and life events, from depression and eating disorders to divorce, alcoholism, PTSD and more. Their dedicated scoliosis group is 17,800 members strong at time of writing, and the forum's open style encourages users to share their feelings and offer support and a friendly ear to fellow scoliotics.
 
This list is curated by the Scoliosis SOS Clinic - click here to find out more about us and what we do.
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