Under Construction!

Our website is currently being improved. We thank you for your patience whilst these changes are taking place.  We look forward to bringing a new and improved service for Turner’s Syndrome girls.

In the meantime please take some time to read the articles submitted by our members. If you would like to submit an article please contact ragdolls.uk@gmail.com we are always appreciative of the support.

Our survey is still available. Click HERE to let us know your views.

Helping Turner’s Syndrome girls achieve their full potential

Carrying a genetic disorder can be a scary experience. It can leave the sufferer feeling isolated and lonely. We at Ragdolls UK know this only too well and strive to be on hand for as many people as possible.

Our support groups are open to girls who suffer from Turner’s Syndrome, their families, friends and anyone who feels they need a friendly ear.

Receive advice and support from girls who know exactly what your going through as well as forge life long friendships!

For more information please contact ragdolls.uk@gmail.com and see what support is available in your area!

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Image courtesy of Pintrest. (Turner’s Syndrome: It’s a girl thing)

We are also looking for Support Group Coordinators who can use their own initiative and build support groups for TS girls in their local area. Contact us for more info!

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Turner’s Syndrome and rare diseases; By Alisha Malik

1 in 3 young children with rare and genetic diseases will not live to see their 5th birthday. (REF: globalgenes.org)

5 babies are born with Cystic Fibrosis and 2 sufferer lives end every week. (REF: cysticfibrosis.org.uk)

Others are denied the chance to live entirely, due to discrimination against Down’s syndrome. (REF: stopdiscriminatingdown.com)

Each sufferer faces their own battle of hardship, discrimination and a struggle against death, including girls with Turner’s Syndrome.

Before drawing their very first breath, children are forced to live a life of hardship and adversity, not having the chance of living even a single day without their condition and its brutal symptoms which can include heart defects, kidney problems and high blood pressure and can further reduce life expectancy by over a decade. These conditions can cause severe challenges in simple daily tasks for people who don’t know a life without their disease.

But you can help change this.

The last few decades have been highly progressive in not just understanding these genetic disorders better due to advancements in research which has allowed improvement in the diagnosis of these conditions but promoting awareness which to this day remains a struggling feat. However, it is also vital to ensure that families affected by these disorders receive the necessary support, help and guidance as currently, there still remains a vast array of incorrect information provided to the community and the public as well as the lack of support available to families.

And this is where YOU can help. You can provide immense help in support groups for families affected by these diseases, you can help to raise awareness or you can helping fundraise to progress the work of Ragdolls UK.  Turner’s Syndrome occurs in 1 in 2500 girls are born with Turner’s Syndrome and we work tirelessly to ensure they achieve their full potential. Just £2 per month can go a long way to opening support groups for Turner’s girls and their families!

If you would like to discuss Turner’s Syndrome or enquire about one of our support groups please contact ragdolls.uk@gmail.com

 

TS and reproductive decisions; Kriss Fearnon

My name is Kriss Fearon and I’m based at the Centre for Reproduction Research at De Montfort University in Leicester. My research is about reproductive decision making in the context of Turner Syndrome. I’m talking to women with TS about how they decide how to have a family. I’m also talking to mums of girls with TS about how they make decisions that could affect their daughter, such as whether to freeze their own eggs for their daughter to use in later life.

So far I’ve talked to five women with TS and three mums of girls with TS. Each one has been really thoughtful in their approach to the way TS affects having a family. Average couples often focus on avoiding pregnancy until the time is right, so discovering they have a problem conceiving can come as a massive and unexpected shock. By contrast, people with a lifelong condition that affects their fertility have often thought long and deeply about whether they want to have a family, and the way they would prefer to do that, well before they are in the position to start making those choices. Talking about fertility can raise difficult and sometimes painful matters, such as how and when to tell a partner, and how to balance the constraints of time, budget and health when deciding which family-building option to choose.

I’m using a method called ‘photo elicitation’, where I ask people to bring three photos that help them express their thoughts and feelings about TS and having a family. We start off the interview by talking about them. It’s a way for people to decide in advance what they want to say, and lead me through the interview, rather than me simply asking them lots of questions. Photos can express better than words just how complex it is to live with TS: one mum whose daughter was diagnosed at birth showed me a picture of a beautiful landscape with sunshine shining through stormy grey clouds, and said that it expressed her joy at having her much-wanted daughter, her pain that her daughter might not get to be a mum herself, her worries about the future, and the stress caused by lack of clarity about what having TS would mean for her daughter’s health.

Listening to the personal stories that people have trusted me with is a very moving experience, and one which has got me thinking about how this research can go beyond academic publications to providing information that could support women with TS. While the academic work may help doctors and counsellors have a better understanding of the needs of women with TS and their families, it’s clear that support from peers and charities has been essential in helping women see what choices are there, and in feeling less alone in making them.

I am still looking for women to interview, so if you are a woman with TS or mum to a girl with TS, and you have thought about or decided on how to have a family, I would love to hear from you.

If you would like to find out more, please contact me by email at p15193445@my365.dmu.ac.uk, or through the website or Facebook page.

Website: http://turner-study.wixsite.com/ts-decisions

Facebook: https://www.facebook.com/tsdecisions/

GoRaise and help Ragdolls UK; by Edita Collins

Fundraising nowadays requires a lot of thought, effort and determination. Few people enjoy being stopped in the street and asked for charitable donations. We believe that everyone should feel good about the act of donating and not pressured into giving money to a good cause they might not normally choose to support. Giving a donation to a good cause shouldn’t be a barrier – it should become a normal part of our everyday lives.

We know that bigger charities in the UK are doing great, while smaller ones are left with very modest funds. As per Alison Benjamin, the editor of Guardian Society, the biggest health charities like Cancer Research UK, NSPCC, Oxfam and the RSPCA make over £10m annually. In contrast, the majority of charities (54%) are very small, local volunteer-run organisations that receive much less funds and really struggle to keep going.

We understand how difficult it is for smaller charities to get help and support as they mainly rely on funds raised by their local communities. Fundraising campaigns and events can cost a fortune and require lots of planning and time. How can this be solved? Well, as fundraising trends are moving forward, it is time for charities to re-invent their money raising strategies. Did you know that in 2015, 93% of donors made a donation online, using their phones and tablets?

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That’s why we have created GoRaise, to make it easy to support your chosen cause or charity just by shopping online. We have partnered with over 3,000 most popular UK retailers who will turn your purchases into donations at no additional cost to you! With GoRaise, every purchase is “guilt-free” as you are raising money to help a charity at the same time.

We love helping all charities regardless of their size. Anyone can create a free online fundraising page and start raising money right away! We’ve also prepared a useful kit of marketing tools to make sure you can spread the word on Facebook and twitter and get more people involved. The more supporters you have, the more donations will come your way!

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We are happy and proud to be supporting such an amazing charity like Ragdolls UK and see them keep growing all the time. Since their start in 2013, the charity made a difference in thousands of lives across the UK. The aim of Ragdolls UK is to support to those suffering from Turner’s Syndrome. They also provide information advice to those who suffer, their families, friends and anyone who needs help.

We encourage you to make a difference as well – choose Ragdolls UK as your supported charity on GoRaise and give them a donation every time you shop online! Every little helps and Ragdolls UK will definitely appreciate your kind gesture.

A message of Hope; by Anna J

Our mission is to help as many girls with Turner’s Syndrome as possible by linking them to the support they need.

Whilst there is some help out their for parents there is very little for the rest of the family. Speaking to STV news in 2015, Tracey Connelly stated, “I was diagnosed with Turner’s Syndrome as an infant and although the doctors were there every step of the way, as I got older I realised that no one had asked any of my three brothers how they felt. There was no real support or information available to them to help them understand the condition. Ragdolls UK was set up to be inclusive of everyone who feels they could use a friendly ear.”

What makes Ragdolls UK unique as a charity is the constant survey available for members, medical professionals and general public to offer their opinions on where help is needed most. We feel this helps guide the fundraising efforts in the most efficient way.

In 2016 a staggering 80% of those who took the survey declared that more support groups should be Ragdolls UK’s focus.

Our mission in 2017 has been to build support groups for girls with Turner’s Syndrome so they can receive the help, advice, support and friendship they need.

Thank you for making it such a great four years for Ragdolls UK so far. Working together we can bring our message of hope further!

 

The Turner’s Syndrome Health Check

Being a Turner’s girl means that it is a must that you keep a regular check on your heart, kidneys and reproductive system throughout your life. It’s not pretty but it is necessary.

As a Turner’s girl I also have a heart condition. Most of my life has been speckled with visits to a cardiologist.

How can you stay heart healthy?

Diet

Well diet is always important. We’re not asking you to live vegan, dairy free, gluten free, sugar free. Some of you may be able to handle that but if you’re like me you may just want to cut back on the things that are bad for you. For the most part it is pretty simple – less sugar, fat and salt. If you are concerned or you feel you can make use of more in depth help a dietitian may be of use to you.

Excercise

I’m no gym bunny but getting some regular exercise is vital in keeping your heart healthy. This can be as simple as taking a light walk or getting off the bus a stop earlier. Climb stairs where you would normally opt for the elevator.

Not only is exercise good for your heart but it’s also a natural anti depressant. Can’t say better than that!

Get Out There

Us Turner’s girls are given a list of things that are wrong with us, what may become wrong with us and what we shouldn’t do. We are a strong, determined and vibrant group of girls and we can do whatever we put our minds to!

All in all, my advice is this:

Keep your regular check ups

Keep your body healthy

Show the world what your made of.

This is not intended as replacement for the advice from your specialist or GP. If you have medical concerns please contact your clinic.

For more in depth detail of how you can keep yourself healthy ask your doctor for more information or to discuss this further with our team contact ragdolls.uk@gmail.com

The Blog that Could; by Tracey Connelly

Ragdolls UK set out to bring comfort, encouragement and up to date relevant information to those who suffer from genetic disorders. A huge part of this is by keeping our blog updated as often as possible.

Since founding in 2013 the Ragdolls UK blog has been a haven of support to those who need it. We are very proud to bring articles from dedicated and talented writers from across the UK. We would like to continue to grow but in order to do this we need your help.

There are still those who feel isolated, worried and ill informed. With your help we can provide advice to Turner’s Syndrome girls and their families. Together we can also build a community of support.

If you would like to become a Ragdolls UK blogger please contact ragdolls.uk@gmail.com for more details.

Your help is greatly appreciated.

Ways to Help

Helping a charity can come in many different forms.

One off Donations

This is a great way to show your support. Donations large and small go a long way towards allowing Ragdolls UK continue their mission.

Monthly Donors

For as little as the cost of a cup of coffee each month you can help Ragdolls UK build on their support groups available across the UK.

You can donate securely through PayPal. Click HERE and follow the instructions.

To become a monthly subscriber by direct debit please contact ragdolls.uk@gmail.com

Ragdolls UK Events

There are various events which raise awareness and funds for our cause that we host throughout the year. Visit our website for more information on them and how you can get involved.

If you would like to host your own event in aid of Ragdolls UK contact ragdolls.uk@gmail.com and our friendly team will help you in whichever way they can.

October will bring The Melissa Jayne Charity Gala. Click HERE to read Melissa’s story and why she is on a mission raise awareness for Turner’s Syndrome.

Tickets are available now but are going fast. Click HERE to read more about this fantastic event and grab your tickets.

Torrance Media Products

Books, movies, graphic novels and much, much more are available from Torrance Media. A whole host of entertainment can be yours with proceeds going to Ragdolls UK.

Author and founder of Ragdolls UK, Vivika Widow, has pledged proceeds from all of her novels to our cause. Click HERE to check out what’s available!

Click HERE to check out what is available from Torrance Media

Shop Online

Thanks to GoRaise you can now support Ragdolls UK projects without any extra cost to yourself. Simply click HERE and shop online as normal. With thousands of retailers to choose from your shopping will go a long way in bringing Ragdolls UK support to those who need it most.

Share our Awareness

Not all of your support need be money. Awareness campaigns form a big part of what Ragdolls UK do. We bring up to date statistics, advice and support. The doctors office and can be a frightening place. By clicking ‘share’ on our articles and social media posts you are helping spread the word!

Out campains are spread from our website and all of our social media feeds. Connecting with us on Facebook and Twitter strengthens our community and our reach.

Save your stamps

Our partners at Recycling for Good Causes are offering donations to our cause in exchange for your old stamps! Simply follow the instructions below and help us fund new and existing projects.

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Take our Survey

Ragdolls UK are unique in that we ask our members, medical professionals and the general public to help us steer our fundraising efforts to where it is needed most. Take our short survey and have your say in the future of Ragdolls UK.

Volunteer with Us

Our blogging community has become a great source of advice and information for our members. We accept articles on the subject of genetic disorders, our projects and any others that may be of interest to our readers. Contact us if you would like to get involved.

For more information on other volunteer opportunities available visit our website

Whichever way you choose to support Ragdolls UK your generosity is greatly appreciated. We are always excited to welcome new Ragdollers. Working together we can bring better understanding, treatments and aid to those who suffer from genetic disorders.

If you would like more information on how you can lend your support to our cause email ragdolls.uk@gmail.com and someone will get back to you to discuss it further.