PCD and IVF Funding

[Freddo_8]

Hello,

I was hoping to get some advice from anyone that might be or have been in a similar situation to us please. I’m 29 and my husband is 34 and has recently been told verbally that he has PCD although a formal diagnosis is still underway. He went to Southampton hospital last week and had all the tests carried out and we apparently have a wait of 4 months to get the diagnosis confirmed.

Alongside this, we had a failed IVF attempt last year which we received due to my husbands 0% sperm mobility (which we now know is due to his PCD) We have been led to believe by our fertility clinic that once my husband has a confirmed diagnosis and a faulty gene identified, we will be entitled to 3 further IVF cycles funded by the NHS with embryo testing.

Please let me know if anyone has and advise or knowledge of this?

I’m worried that we could be waiting for a long time for a diagnosis and then not get any funding anyway. We are fortunate to have the money to try another cycle but would rather keep this for a sibling later if we can get the funding for our first child.

Thanks

X

[FPolly]

Hi!

I’m sorry to hear your 1st IVF was unsuccessful- I can relate to that.

I’m not 100% sure on that, it may be worth contacting your CCG for your area or someone else may be able to suggest another contact to speak to.

We are self funding as we are ‘only’ entitled to 1 round. Unfortunately we’ve been let down in many ways and found the stress of waiting too much.

We also decided during a meeting with the genetic councillor that we wouldn’t have genetic testing. Simply because the chances of our baby being born with PCD is so low, but also because even with genetic testing they can’t rule out the embryo being a carrier.

I’m not sure if this is something that youve discussed with someone and may or may not make difference for you...

In our area, it states were allowed up to two full IVF cycles before ‘losing’ the funding entitlement. So I’m still trying to get IVF funding but have also had 1 failed round and about to start our next.

There is so much to consider and if this is something that’s new to you and your husband it really is Information overload.

I hope that helps

F

[Freddo_8 in reply to FPolly]

Hi,

Thanks for your response. I too am sorry to hear that your first attempt was unsuccessful.

We are only entitled to 1 NHS funded IVF cycle in our area, however our fertility doctor believes that we should be entitled to either 3 more, or up to 3 NHS funded cycles in total with PGD if my husband has the PCD diagnosis and the gene can be detected.

I too feel like the waiting game is very stressful and really just want to get back into another cycle as soon as possible. However, we feel torn as the additional funded cycles would really help us financially. As you mentioned, there is also a chance that the gene wont be detected anyway

We have been given a time frame of up to 4 months before the diagnosis is given but I'm expecting that to be longer - just being realistic so think we will stick it out as long as we can.

May I ask if it's you that has PCD or your partner? Do you remember how long it took for the diagnosis to be given to you/your partner?

Wishing you the best of luck for your next cycle, when do you think you will start?

XX

[TerryBun Administrator in reply to FPolly]

As I understand it, any child born to a parent who has PCD, will be a carrier of PCD. I have PCD and so my daughters are both assumed to be carriers, it's not been an issue for them though, they don't seem particularly bothered by knowing they are carriers.

[fionac66]

Hi this video explains why the tests take so long ....pcdsupport.org.uk/what-is-pcd/

I think the number of IVF attempts you can have are very much postcode dependent. Good luck though.

I understand that if you have PCD and have a baby they will be a carrier but they still will only pass on to their children if their partner is also a carrier ... so the risk of that happening is low. Also now with genetic medicine you can probably check for that now.

Good luck and let us know how you get on

[Brora71]

Hi there - I went through a similar situation and completely empathise with you. I would urge you to check if there is any AGE CAP on being eligible for funded treatment. I went through a long process of diagnosis etc only to be told that yes I was eligible for 3 rounds of funded Ivf because of my pcd but unfortunately I was over the age limit to be eligible .. so we ended up having to fund ourselves. If it had been 6 months earlier we would have got the funding!! I was devastated that no health professional had made me aware of this, so I urge you to please find out as many of the facts as you possibly can and if necessary constantly push the health professionals to prioritise your case. I wish you well

[Freddo_8 in reply to Brora71]

Hi Brora, thanks for your message and so sorry to hear of your experience on this.

I am aware that there is an age cap of 40 in most cases, may I ask if that was the case in your situation?

I hope your IVF journey is going well.

[Brora71]

Hi there - no regrettably the age limit was 35 in my area. Thankfully we’ve now got a beautiful 9 year old daughter but unfortunately weren’t successful with any brothers or sisters for her. All the best and take care x

[Karlo]

(English is not my first language)

Hi,

I'm sorry to here your first in vitro transfer was unsucessful, as was the case with me and my wife. However, our second transfer was a success, and my wife is currently 7 months pregnant, with a healthy baby boy on the way. We're exstatic.

I'm male, and have been diagnosed with, by double bronchoscopy and genetic testing (whole exome sequencing), PCD.

Genetic testing was done through GENDIA lab in Belgium, which was cheap (around 1550,00 Euro) and very fast (payment made 16. January 2017., received results by 19. February 2017.) My counsultnat / doctor is a neuro-pediatrist specialised in genetic counseling, with good ties to the GENDIA lab, and has personal connections with their founder, Dr. Patrick Willems. I can give you his email if you wish it in a personal mail.

Regarding IVF, my wife and I went through IVF-ICSI procedure, since my sperm motility is = 0%. We have had good fortune to be referred to a great private clinic in Zagreb, Croatia, which is (I assume) much cheaper than other clinics in the UK. Extremely profressional, courteous, willing to explain and help, and gentle (as per my wife). If you would like to know more about the clinic please PM me. We have been to our fair share of specialists, domestic and abroad (money was not an issue), and I can wholeheartedly recommend this clinic my wife and I went to and it's specialists.

Whatever you decide to do I wish you the best of luck.

Karlo

[Freddo_8 in reply to Karlo]

Hi Karlo,

Thank you very much for your message. It’s so good to hear that people in the same situation as us have had success!

I will let you know if we require the details you mentioned and very kind of you to offer.

Wishing you and your wife a long and healthy rest of your pregnancy!

Best wishes