PKD Charity for Autosomal Dominant PKD

The link between PKD and brain anerysms

Hi

Finding it difficult to find others who have PKD and brain anerysms that are linked with this disease. I’ve been on the Headway sight but still really haven’t been able to find anyone who have both of these conditions. PKD patients have a connective tissue problem as I’m due to have an aneurysm treated with an endovascular procedure I’m keen to find others who have also gone through this.

Thanks Andrea

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Hi Andrea,

there's a really great Yahoo group, called PKD-uk, very informative and supportive. There's been several chats on there about aneurysms, you can search for subjects or ask a new question. Not sure if the link will work: uk.groups.yahoo.com/neo/gro... You'll have to sign up to it. From what I understand, the procedures have become a lot safer in recent years, especially the coiling, but I'm no expert.

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Thanks Atropa will have a good look at this and contact PKDuk directly, I’ve had some communication with Tess Harris so may contact her directly also.

Many Thanks ... the nerves are starting to build now as the procedure approaches though nobdate yet🙄👍🏻

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Hi Andrea, if you have PKD, you are at higher risk of brain aneurysms than the general population. On our Facebook UK group, you will find several people who have had aneurysms treated successfully.

This is the link

facebook.com/groups/pkdchar...

All the best

Tess

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Hi Tess, the facebook group looks useful! But is there a reason for the members to be visible to the public? Some people may prefer to keep their personal health information private. It is possible to hide groups, but not sure how many of the settings can be changed.

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Unfortunately that is the way Facebook groups work. Your membership of a closed group like this is not listed on your personal page, but if anyone goes to a specific group, then they can see the members. I don't know why anyone you know would go to the PKD Charity group and look for you among the nearly 1300 members. But even if they find you, that doesn't prove that you yourself have PKD. :) If someone was to ask you about your membership, you could always reply that someone you know has it -- which is perfectly true.

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Sorry, I didn't see that Tess has replied more thoroughly.

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Hi jajaja, it's a bit more complex like that I'm afraid. Insurance companies or potential employers could search for your name, for example. There's a reason why health information is usually regarded as confidential.

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Hi, there are 3 types of Facebook groups: Public, Closed and Secret.

Our PKD UK group is a Closed Facebook Group. Anyone can see the name of the group but they can't join the group unless they are invited by an Admin or ask to join (and then they are checked by Admin before approving or not).

Anyone can also see who is a member of the group but can't see the messages. Only members can see those.

We can't change the FB settings to prevent the names of members showing. It's a universal setting.

The most private type of group is Secret. Those groups are completely hidden, so people with PKD can only join by direct referral, invitation or a link from our website for example.

HealthUnlocked is more private than the Closed FB groups. We don't have as many members on HealthUnlocked and so there's less interaction and peer support.

The only other way to have a closed group is to establish a private bulletin board on our site. We had one in the past but it was difficult to manage and was spammed a lot. When Facebook launched, we closed it because everyone was using FB.

We also have a very old private group on Yahoo, which used to be very busy but again suffered when FB launched.

Not much we can do about FB unfortunately. But maybe one day they will create a hybrid between Closed and Secret.

BW

Tess

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Thanks for the thorough reply, Tess. I wasn't quite sure what types of fb groups there were, so it's good to know. I also didn't know HealthUnlocked was more private - I thought it was completely public!? Would it be an idea maybe to have a secret fb group, connected to a public page to direct people to it? I realise you need to advertise PKD Charity, and also make it possible for people to find the group. So the public page could advertise, and post news articles, and have a regular post pointing people to the secret group. I think confidentiality is a big issue when it comes to medical problems, and a big charity like PKD Charity should encourage people to be aware of this. People may not realise that their names will be publicly displayed.

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Andrea, hello my name is Lisa. I know the nerves you are feeling. I have a few family members who have brain Aneurysms. They have either went through coiing, brain surgery ( bc of location), whatever needed to be done! Crazily though, we were told theirs are not related to PKD bc they were tested! In 1995, we suddenly lost My Mom right after she had just found out she had PKD! She suffered a Cerebal Hemmorage! She stayed in a coma for 3 months, my son(4), my niece(2) and myself(29) were the last to be with her! My mom's aneurysms were all in her brain stem. The doctors told us her's was not related to the PKD, they were a hereditary form! I have PKD and My So was diagnosed at 16 yrs old. My advice, do everything your Nephrologist tells you! I have 4 chronic health conditions, and find it is always a must with all my doctors to trust, have faith and a great relationship! Andrea, I wish you many thoughts, prayers and hugs! You have a friend on this end! God Bless!

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Hiya Lisa

I can only apologise for my delayed reply I’ve only just noticed it!!!

and thanks for replying to my post. You e certainly had your fair share of heartbreak through this awful condition. I too lost my Mum 30 years ago when she was my age 58 but thankfully my anerysms have been detected and my coiling date is looming!!! 29th May so I’m packing things in now before surgery.

I trust and like my surgeon and have looked long and hard to find this person. I’m happy with the hospital so it’s as good as can be I suppose. Though I’m still gripped with fear in the early hours as what the outcome may be. Hopefully all will be fine.

My friends sister passed away with a fatal aneurysm exactly like my Mum.. never regaining consciousness and I always think what would their advice if they had known their fate.

Thanks again for your support and good wishes and will let you know how it all goes🤗xxx

Regards Andrea

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We do have a couple of secret groups but they are usually connected with a project. It would be a big step to turn our large group completely secret.

On HealthUnlocked, you have can more anonymity with an avatar or nickname. FB doesn't allow that any more.

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Why not start a second group and make that secret, and see which one people prefer? Just a thought, I don't know how much work it is to admin them.

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Hi Andrea,

2 of my uncles both died from having brain aneurisms before we realised the link with PKD. My sister and father have both had their aneurisms successfully treated in recent years with the coiling treatment. It’s a very nervous time. Good luck with your treatment.

Rachael x

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Thanks Rachael

I’m very scared but called Headway and was put in touch with a lovely person who helps people like myself with surgery looming who is terrified and people with TBI and helps their with support. She very kindly met me at Walton Centre in Liverpool where we went up to a ward and a great chat. Although I’m still very scared she’s put it all into perspective and eased my fear somehow.

Thanks for replying to my post and apologies for my delay

Warm Regards for your kind wishes

Andrea xx

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