Campaign Update – APPG – Annual General Meeting

 

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On 18th June 2014 our APPG AGM (All Party Parliamentry Group- Annual General Meeting)  for Thalidomide and Other Harmful Drugs in Pregnancy.  As we are working very closely with Thalidomide Campaign Team INFACT were invited to be members of this Party due to our on – going campaign.  Normally with an APPG it is only the members and MPs  who attend the meeting but as this was the AGM  any persons could attend the meetings (with an invite)  Those in attendance were Drug Manufacturer Sanofi, NHS England,  AEDiP, MHRA, MPs, OACs , parents of affected children , Janet our Educational Officer Catherine and myself

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The agenda of yesterday’s meeting was basically to discuss the issues surrounding Epilim (Sodium Valproate) and what next steps were needed.  Janet and I have been in contact with Dr June Raines from MHRA since last year, and when we met last we expressed our concerns that currently in NHS there are no information booklets with regards to how taking Epilepsy medications can affect the baby during pregnancy.  It is now official that INFACT are producing booklets to go in every clinic in NHS where Anti Epileptic Drugs are prescribed.  We have been working on this for a very long time, and is still in draft mode with a lot more work to do, but the fact we are doing this is just fabulous.  The fact that we are helping educate ladies about this topic is the reason I decided to speak out about my families experience with Epilim, it feels right.

It was a very positive meeting and I personally enjoyed meeting other parents.  Meeting mums who had been fed a lot of lies having never met me gave me the chance to put all the jealous and bitter accusations to bed. It amazes me the  lengths people will go to involving innocent people on their merry go round.  What have they actually achieved out of it ???? Yep nothing,    Very sad !

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Hearing their experiences of how Epilim had affected them  was heartbreaking.   These mums like myself have been dealt a huge injustice.  Hearing also about the lack of support we as parents get with our kiddies and the continuous fight we have with local authorities and education.  We are also hopeful that a database will be worked upon with Thalidomide Campaign team by which, mothers on medication and their children will be registered on a database, so that for the future, all information about medicines and the ladies on them will be collated.

In Parliament that day we also met TV Presenter Kate Garraway.  I get so celebrity struck when I see famous people.  I ran over to her for a quick picture, and she was so lovely.  She must have thought I was a deluded woman !!! I was just excited.  My kids were made up when they saw the picture.

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We are now preparing for the European Review into Epilim as we are giving evidence.  We have an awful lot of evidence to put forward and I will update you all after the event

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Last piece of good news is that INFACT are now a registered Company/Trust.  We were advised to do this by our solicitors, with regards to the nature of our campaign and the fact that we are seeking compensation on behalf of the thousands of affected peoples by AEDs.  We are now official and little old me is named as the Managing Director :J) With Janet being CEO

 

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Achievements of FACS Children

This post is dedicated to achievements children with FACS . We want to hear from parents whose children have FACS, and what they have achieved, it can be from the smallest achievement to the biggest or just showing how proud you are of your child. You can send the info to office.infactfacsa@yahoo.com or send via inbox on our FACSA Facebook page. They will be put on this page with pictures and you can nominate them at any time for anything …..even little things are achievemnets….. Lets see our FACS children

Monday 28th April

Joshua

Joshua

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Here we have a picture of Joshua last year at his foundation stage Graduation. On his Certificate of Achievement he has been awarded for always trying hard in his subjects, making improvements in literacy and for being a confident little boy.
All fabulous traits to have :)

Sunday 27th April

Congratulations to Ashley who has just signed a contract at Quirky Kids Agency for the Pauline Quirk Academy of Performing Arts.
This is Ashley pictured with his mum Christine 1149291_10201981239751828_41704661_o

European Review into Sodium Valproate (Epilim)

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We here at INFACT have been invited to provide evidence with regards to the Pharmacovigilence Risk Assessments Commitee (PRAC) European Review into Epilim.

We are asking parents who have taken Epilim or any other anti convulsants DURING pregnancy to write down their stories ie

Name, Date of Birth
Why they were prescribed, dosage
Were they warned about the effects during pregnancy
Has taking the medication affected the baby
Impact on family life

These stories will then be put towards our documentation and submitted to PRAC.

PARENTS: This is your chance to make your voice heard, to officially clarify the impact Epilim etc has had on your children and family. Your story will make a difference, so do submit your experience.

Any submissions can be emailed to office.infactfacsa@yahoo.com

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Epilim and Obesity

I’ve read an article today and I’m so stunned.

https://www.epilepsy.org.uk/news/news/valproic-acid-may-treat-obesity-63768

The medication Epilim (Sodium Valproate)  prescribed for a variety of things Epilepsy, Migraine, Depression, Bipolar Disorder etc it would seem the drug company Sanofi want to continue their payroll and profits…….as Epilim  is now being prescribed for Obesity.

As always Sanofi have totally contradicted themselves.  Epilim is renowned for its increase in Weight Gain and has been published by Sanofi on the PILS leaflet (Patient Information Leaflet) that a side effect of Epilim is Weight Gain.  I, myself was on Epilim for a good few years.  My appetite definately increased, I was always hungry so with that was the obvious weight gain and I’m not just talking a few lbs ……. a good 4 stone.  We have spoke to a number of ladies who have also been on Epilim and they themselves have put weight on.

Here at FACSA we currently understand that Epilim is being prescribed OFF LABEL which means it does not hold a licscense to be prescribed.  In Britain MHRA (Medicines and Health  Regulatory Association) govern every medicine that is allocated to be prescribed.  It would seem in todays world, its not about patient safety, duty of care, making sure patients have the correct information……but its more about keeping drug companies in the money to help and support themselves in their high flying careers and lives.

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Fetal Anti Convulsant Syndrome Awareness Week 2014

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Monday 10th Feb we will be holding National Fetal Anti-Convulsant Syndrome Awareness (FACSA) Week 2014. This is our first Official Awareness Week and so it is prime opportunity to raise awareness not only for the condition but also for the Organisation and the work of the Trust(IN-FACT).

What is #fetalanticonvulsantsyndrome

Fetal Anti Convulsant Syndrome is a condition caused when a woman taking Anti Epileptic drugs (Sodium Valproate, Carbamazipine & Phenytoin and others) either for:

Epilepsy, Depression, Mood Swings, Pain Relief, ADHD, Bipolar Disorder or Migraines

has been prescribed before or during her pregnancy.

FACS is thought to arise because some of the medications taken to treat all of the above pass through the placenta and into the developing foetus. If a child is diagnosed with FACS there is a very high chance they will also have symptoms of the list below. It is important that your child has a diagnosis of FACS Syndrome and then seeks other diagnosis if needed.

Spina Bifida
Heart Defects
Limb Defects
Inguinal Hernia
Joint Laxity and Poor Muscle Tone (very bendy)
Visual Problems such as short sightedness, squint and strabismus
Characterisric Facial Features
Incontinence
Scholiosis (Curvature of the Spine)
Delay in Reaching Developmental Milestones
Gross and Fine Motor Difficulties
Lower IQ
Autistic Spectrum Disorder (Autism, Dyspraxia, Aspergers Syndrome)
Attention and Memory Difficulties
Speech and Language Difficulties

If you feel your child may have FACS you must speak to your GP about your concerns and request to be referred to a Paeditrician or Clinical Geneticist. Not every child who is exposed to these medicines will have FACS. NEVER stop taking your Anticonvulsant medication without medical advice as this could pose a serious risk to you and if pregnant your child

http://www.dailymail.co.uk/health/article-2146918/Why-doctors-warning-new-Thalidomide.html#axzz2JxKeGSls

Manchester Evening News

Manchester Evening News

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We have information going out in areas such as London, Newcastle, Nottingham and Manchester, with awareness being raised through the Twitter campaign at Emma4facs and on Facebook where people can find us by typing FACSA into the search bar

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Twitter
The hashtag #fetalanticonvulsantsyndromeawareness will be on all our posts and would be very grateful if any posts you see with this hashtag you could kindly retweet.
You can also type in http://www.facsa.org.uk onto tweets for people to get more information

Facebook
If you type in FACSA into the search bar we will appear. Please hit the LIKE button and share amongst your friends and colleagues. This will only take a few seconds to do and in doing so you are helping our National Campaign reach more ladies who WILL be taking these medications.
We have lots of news already filtering in and will keep you all posted as the week goes on.

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FSA - FACS SYNDROME ASSOCIATION

FSA – FACS SYNDROME ASSOCIATION

FACSA Newsletter

We have compiled our latest Newsletter with all information we feel is relevant to our campaign, for parents to know about. We will publish our next Newsletter in 6 months time. If you would like a PDF copy to be emailed to you, do get in touch.

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