Bravo Dr Mary Herbert of Newcastle University

http://www.independent.co.uk/life-style/health-and-families/health-news/revealed-why-risk-of-infertility-and-birth-defects-rises-with-age-2069229.html

Back in September this year Dr Mary Herbert of Newcastle University in the UK, reader in Reproductive Biology at the Institute of Ageing and Health, led a team whose research showed that declining levels of proteins called cohesins, which act like a glue holding chromosomes together, are the key to reproductive ageing, and why infertility and birth defects rise with age.

As part of the article on her research (see link above) it was reported that obstetricians have warned that the "bio-panic" women used to suffer on their 30th birthday has moved to their 40th. It further went on to say that some experts have predicted that a fertility time bomb hangs over Britain over the coming decades as women delay childbearing. One in seven couples have problems conceiving, and this could rise to as many as one in three if present trends continue.

With respect to her research and this issue, Dr. Herbert stated that:

• "We are at the stage of saying how the engine works and what is broken. The next stage is answering the question: can it be fixed? Could you add cohesin that would do the job [of holding the chromosomes together]? A lot of effort is going into answering that."
  


• However, no solution to infertility was imminent. "The main message is for women not to delay childbirth. The best way for women to avoid the problem is to have their children earlier. If there are social reasons why they are delaying then we should look at these and make it easier for them."
  

I wrote to Dr. Herbert saying how much I had enjoyed reading about her study and in particular her conclusion about clearly messaging to women to not delay childbirth, and highlighted that the message she advocated sadly is not conveyed in any way properly or sufficiently to women so that they know the risks, and working women are particularly at risk. I asked for any support or guidance that she could provide in order to raise awareness on this topic, and I would just like to share with you all the wonderful response I received from her today.

As part of my letter to Dr Herbert, I raised her attention to this blog and mentioned that in it suggestions are made for improved education and awareness as well as referenced the study in Canada where it warns women could risk being unintentionally childless due to their lack of awareness of how fertility declines with age. I also pointed out the poor success to date in my attempts to raise awareness at the levels that have the authority and gravitas to make a change: I highlighted the letters I had written to the UK's Department of Health, the Department of Education, HFEA, the Royal College of GPs and the Royal College of Obstetricians on the need for improved education and the disappointing response - either a plain vanilla 'we are looking into it and aware of the issue' or else no real acknowledgement as in the case of the RCOGPs who simply said it was already on their curriculum but did not acknowledge that GPs and nurses weren't having the conversations with patients on the topic at pill checks and pap smears. And I pointed the the young women's magazines that I contacted to see if they would be interested in covering the topic and explained that I also had had no response from these.

Dr Herbert responded to me today and I am over the moon with her support:

After consulting with her colleagues about the problem of getting the reproductive ageing message to the family planing practitioners, she indicated that the general feeling is that targeting the practice nurses might be the most effective way to raise awareness. And that the Royal College of Nurses ('RCN") might be a good place to go.

She had also spoken with the head of nursing here at Newcastle Fertility Centre about the possibility of organising information days and/or leaflets for GP practice nurses who was enthusiastic about the idea and therefore hopefully something would begin to happen in that direction.

I will follow this up with the RCN but I would just like to say here and now a massive thank you to Dr. Herbert for her efforts here - this really is the wonderful type of support that will make a change and make for a better informed set of twenty and thirty somethings for the future. And hopefully avoid the 'fertility time-bomb' that some experts warn about.

The assumptions we make of those with fertility challenges

One life lesson that I always seem to never quite learn is that you should never make assumptions about others, because you can realise how wrong you are if you do so without asking any questions or getting the facts. I was very recently reminded of this all over again.

We were talking about someone that we actually don't know, who we had heard was having fertility challenges, and who we were told had said did not want to do IVF. The assumption made was that the person had investigated this with fertility specialists before coming to that conclusion. But it then transpired we may be wrong and I felt very bad.

Here's the thing - even those of us that battle with fertility issues can forget that everyone's experience is different. We shouldn't assume anything. We cannot assume to have an idea of what that person's feelings and thoughts are, and we shouldn't even for a nanosecond pretend to try and second guess. This whole situation certainly made me think a little more about the issue of fertility challenges.

• It can cause a great deal of anxiety and we all react to it in a different way. In someone like me who is such a 'do-er', it translates into wanting to do all the investigation and steps I can to work out what I can do to increase the chances of a successful pregnancy. In others that anxiety can have a paralyzing effect. And there are others who are very relaxed about their chances of success and feel that there is nothing which they need to do. Some of us may need help however, to relax, some of us may need someone to lend us a hand to help us out of our 'mind fog' and some of us may need nothing more than a friend or someone to be there. The biggest challenge is for the person themselves to work out which type they are and for others to help them in this process - this sounds easy but it can be very hard.
  
  
• There is an assumption that the cure to all fertility issues is IVF. Because it is so popular nowadays, we take for granted that this is the only way to go in order to deal with fertility issues but actually that is not the case. There are some fertility specialists who are of the view that people move on too quickly to IVF before trying other things first. And if someone feels that IVF is not for them, for whatever reason, they really shouldn't feel there is nothing they can do. There are certainly lots of things people can try besides IVF which can be helpful and many promote natural fertility remedies.
  
  My personal view is that the two can be complementary - you can pursue traditional medicine and also do natural things like reduce toxins, for example eat organically and do acupuncture to maximize your chances; but you should be open with your practitioners as to what you are doing to be sure the two do not clash with each other. And we should never criticize someone if they don't want to do IVF - it is a personal choice, we should remember to be supportive to alternative things they may wish to try. In my opinion, people can sometimes be too quick to dismiss natural and alternative remedies.
  
  
• We should never forget to stretch out a hand to others - you can never make someone come to you for help, but you can extend a hand and say you are there if they need to speak or point them in the direction of someone who can help. Even if you don't know the person, be there for them, particularly if you know what it is like to be there yourself.
  
  
• I realized how lucky folks in the US actually are. There are many wonderful organizations such as The AFA that are there to help support folks through their family building experience. These organizations are truly active, enthusiastic and progressive. Speaking with counterparts back in the UK, I realize how much more the help and support in that country is ad hoc and just not on the same level - it is changing and getting there, but not quite yet. (If any UK person is reading this and doesn't agree I apologize - this is just my personal view.)
  
  

So where does this all take me? Well probably not very far. But if nothing else it underlines to me how difficult and challenging dealing with fertility issues is. Nobody should ever underestimate this and assume that everyone reacts the same way. Stretch out a hand and seek to understand the person. This isn't about you - it is about them.

Posting on the AFA website: http://theafa.typepad.com/theafablog/2010/11/the-assumptions-we-can-make-of-those-with-fertility-challenges.html

Blastocyst Chromosome Screening - new test trials

Article in UK press:

http://uk.news.yahoo.com/4/20101102/tuk-women-due-to-give-birth-in-new-ivf-t-dba1618.html

CCRM randomised control trial:

http://www.colocrm.com/NewsEvents/10-02-12/Randomized_Control_Trial_for_Blastocyst_Comprehensive_Chromosome_Screening.aspx

Blastocyst Chromosome Screening (BCS) can spot chromosomal mistakes in outwardly normal-looking embryos that may prevent pregnancies or lead to miscarriages. It is still in the trial stage but if successful, it could help increase the IVF success rates as it will help doctors to pick out the 'best' embryos. The trials run so far have focused on the female age bracket 35 to 45 it seems (late thirties in the UK and 38 to 45 in the US).

There is one thing to be said about IVF and it is that innovation trail blazes on. I had never heard of BCS and I thought that my research on IVF was fairly thorough - clearly not! ;) I picked up on this new technology recently in the UK press referring to the first trials in Europe but it is already being done in the US as part of a trial at CCRM - see the second link above.

Back in February of this year, CCRM as part of its notice calling for people to take part in a randomised control trial said that preliminary results from their initial phase trials indicated higher implantation rates, lower miscarriage rates and higher live birth rates following BCS.

I don't know where the UK press take their following statement from, "evidence from the US suggests the procedure can boost the chances of a viable pregnancy after In-Vitro Fertilisation from around 35 to 75 per cent" but if true it is not insignificant.

So what is my lesson learnt? Well, the very institutions themselves will not always tell you about these trials they are running - I am not sure why - but having done an IVF at a CCRM sister clinic I do wonder why they did not tell us about this trial; perhaps we did not fulfil all the criteria? What I would say to anyone out there in the 35 to 40 age bracket is to ask about this! I do not know if it is the answer to your prayers but it is worth asking the doctors about.

Cougars and APS

I was sad to read the story of David Arquette and Courtney Cox splitting up. This is always a bitter-sweet event, as you hope it is a decision that they have taken for a happier future, yet you always feel a sadness too.

In their case, this is even more the case when you factor in the troubles they went through to get their little girl Coco - rounds of IVF and finally a diagnosis of antiphospholipid syndrome (an autoimmune disease associated with thrombosis and pregnancy complications).

I have two (unrelated) points to make:

1. watching Good Morning America discuss the whole Arquette/Cox story on 13 October 2010, the issue of 'cougars' arose and a psychologist professional listed fertility treatments for one of the reasons there were now more 'cougar' women and why the older woman was not scared to 'go it alone' if necessary. I found this very frustrating - I think that it is only a handful of women who feel that fertility treatments mean they can settle down with a younger man at a later stage in her own life - in other words, encourage her to become a 'cougar'. To make such a statement is to over-simplify things.
   
   It may be that fertility treatments as reported in the press given the impression that IVF is the holy grail to allow you to have a baby late into your child-bearing years, but as anyone who reads this blog will know, yes fertility treatments are great, but there is also a lot of misrepresentation in the press about IVF and how it affects female fertility. Basically a woman in her fifties cannot have a child using her own eggs (unless she froze them much earlier), even though the press would have you believe so!! And even freezing your eggs isn't a guarantee to success - it is still early days in that territory.
   
   
2. antiphospholipid syndrome is still one of those tests which you only get most times after having had problems conceiving for a long time, or a few miscarriages. It does not feature in the standard fertility tests that they do right at the beginning. And some doctors still poo poo the whole auto-immune system issue of how it can affect fertility. So it is worth educating people on this and Courtney Cox did a wonderful job at that! Getting it known in the main stream so that people know what questions to ask if they are ever in the unlucky position of having to sit in a fertility specialist's office.

So may be when the dust has settled, and the hype over cougars has calmed, an element of realism will settle back in. But I doubt it - so in the meantime I just sigh when I see comments made flippantly on television about fertility treatments (even if it was only 2 or 3 seconds of the story), and I contemplate writing in to GMA too to tell them my opinion. I question if this is over-reacting, being too sensitive, I'm sure the woman on the show didn't mean to cause offence or trivialise fertility treatments, but then again there is a part of me that says 'no' - if we don't speak up people will continue to only hear the crazy hypotheses put other there sometimes such as - fertility treatments lead to more cougars. We need to avoid the general public taking away the wrong impression of fertility treatments - as the majority of the women suffering fertility issues and battling with fertility treatments are not 'cougars' or 'wannabe cougars'.

Is the message starting to get through?

In recent times, two mainstream young women's magazines have run articles on fertility - Marie Claire in the UK and Cosmopolitan in the US. Hooray!

I ran down the list of fertility articles published by Marie Claire in the last couple of years and this is the first of its kind - up until now it has been far more focused on IVF treatments and how it is a wonderful tool to delay motherhood.

So let's hope this is a sign of shifting sands - that people are now starting to talk the honest nuts and bolts about all things fertility to make sure we make informed decisions at the right points in our lives.

But we still have a long way to go. Seemingly the press is still embarrassed to run articles that discuss things like 'vaginas' but it is okay to discuss 'sperm' - what a wonky crazy world we live in. Until we get over these hang-ups, which are self-created, we are never going to really be in a world where we have open and honest discussions about the things that matter - and one of these are how babies are made and our own sexual health.

Anyway, one step at a time I guess. So for now - well done Cosmopolitan and Marie Claire! But dear magazines, this is just the first step - don't think you have discharged your duty to mankind with this one feature - keep at it, and keep spreading the word with more features like this please....

Who is Lisa Faulkner?

http://www.mirror.co.uk/celebs/news/2010/05/03/adopting-billie-is-the-best-thing-that-s-ever-happened-to-us-115875-22229855/

Who is Lisa Faulkner you may ask? I certainly did. Having been out of the UK for many years, and even when I was there not a massive TV viewer, I had no idea who this television actress was.

Yet someone pointed her out to me recently as an exemplary woman who showed the 'other side' of infertility/subfertility - where IVF doesn't work and you have to think of something else. For some this is adoption and for others it is a decision to lead a child-free life. Each is a completely valid life-choice. This 'side' is so under-represented in the press.

The press rarely reports the cases where IVF doesn't work because (a) people like to hear success stories, not sad ones; and (b) individuals are probably less willing to put themselves out there if they fear they will be viewed as a 'failure' - so it is great that there is the occasional story like this to change public perception. We need more honest accounts like this one.

There is nothing but positive from her story. In her case, they opted for adoption and there are some wonderful points that jump out from her story:

• the path to motherhood can be via a different route - adoption;
• you are no less a 'woman' if you adopt this route and you can hold your head up in public and say 'look at me!';
• how emotionally and financially draining IVF can be, not to say cruel;
• that the adoption process is not easy and requires determination; it took them two years to be approved given the vigorous review process they undertake of prospective parents;
• adoption can be so rewarding - they have looked every minute of having their little girl Billie. She says, "adopting is such an incredible thing to do. I really can't imagine what our lives would be like without Billie."

It also highlights what a difference having a supportive husband or partner will make. He spoke of his desire to adopt if IVF didn't work, was supportive and had a great sense of humour through it all. She was very lucky and I am sure that made a massive difference. They were on the same page with respect to how they wanted to create their family unit and got through it together. Not every couple is so fortunate on this front, and it can create a whole new set of challenges to work through when you have already gone through so much.

So I would like to congratulate Lisa for her honesty and for being a real woman. She tells it to us like it was for her. She doesn't hide the fact that IVF doesn't always work. Even the miracle doctor in the UK Dr Taranissi of ARGC in London wasn't able to make it work for them (he is the doctor credited in the press recently for helping Penny Lancaster get pregnant via IVF). But that was okay, as with the wonderful support of her husband, they were able to create a family via adoption.

AFA Blog Link: http://theafa.typepad.com/theafablog/2010/09/who-is-lisa-faulkner.html

PCOS Awareness Week in the UK - 20 to 27 November 2010

http://www.verity-pcos.org.uk/events/pcos_awareness_week

Above is the link for the very first PCOS Awareness Week that is taking place in the UK from the 20th to the 27th November 2010.

This is very exciting as this a condition that affects so many women, and it is good to show support to each other, and educate each other. So often women are unaware that they have the condition until they go to see the doctor or start to try to conceive.

So get involved!

During PCOS Awareness Week, they are planning at least one activity every single day. These will be activities run by the PCOS Charity Verity but also by women with PCOS and businesses that support the work Verity does, (can you do something in your local area?)

The activities they have instore so far for PCOS Awareness Week include:

Evaluation of how the NHS is supporting women with PCOS
Shouting about PCOS at Speakers Corner in Hyde Park
A knit-your-own PCOS Snood for winter
A PCOS calendar
PCOS conference with sessions on emotion, excess hair, alopecia, fertility, weight loss, being slim with PCOS and all about your menstrual cycle

PCOS Awareness Week needs your support if it's to be successful now in the future. Get involved!