HD Australia

hi my name is Nicole - this is the 1st time iv written in this forum. iv been reading everyone's stories and i guess it was just coming to write for the 1st time which made hd in my life so real. my mum was diagnosed 18months ago at age 52 and my brother also found out that same week that he had the gene. it has taken a while to get over the shock of both of them testing positive.

through a long time of thinking and wondering - iv started the testing process. i have an amazing partner who has stood by me through the whole ordeal. we are really excited about starting a famliy - but i feel i cant until i know myself about hd. if i do have hd we plan on going through ivf with pregenetic testing - my brother and his wife have a 2month old baby and they went through the same process.

well my blood has been taken but is sitting in the lab - my geneticist advised me to look into life insurance prior to testing. i have found it such a hard thing to do - no one wants to insure you with a family history of hd!!!! one insurance company suggested a play ignorant on the forms in regards to family illness as mum has only known for a short time - i dont know if i can lie like that - but then its the only way i will be insured - has anyone had the same problem or any ideas as to how to deal with it??????????????????? im 24 - never thought id be looking into and facing issues with life insurance!!!

although im only a new member - reading stories of other people in the same/similar situations as me makes me feel not so alone. its so hard - everyone knows about cancer and other illnesses - hd is so rare and unknown - friends try to understand but its sometimes hard to talk to them. i think its great this forum has been created.

thankyou!!!!!! hope to get to know a few of you through reading each others stories.

nic

Hi Nicole and welcome to the forum. Finding out HD is in your family is a very life changing experience and to find out that your mum and brother have it in the same week would have been very hard to get your head around. I hope that the forum can help you learn and give you the support you need in regards to dealing with HD.

My brother has tried to get life insurance for over 12mths now and is not considering finding out if he has HD or not at present. I know that Dad now wished that they didnt acknowledge it was in our family, as we have other family members who do not acknowledge HD is in our family and they are covered with life insurance. Its almost as if you are penalised for being honest. I guess you have to decide what way you think you should go, but you wouldnt be the only one to not put down HD is in your family to get Life insurance.

Ill let Michelle tell you about her situation but it was just a fluke that she got granted life insurance before she went on to find out her testing results, they accidently accepted it and couldnt take it back. My dad has tried through legal means and letters from a HD worker to try and get it but nothing has worked. Sorry not very helpful to you.

This topic has been brought up before so maybe someone else has had some more experience with it since then.I hope you have some luck with it.

Are you able to now pick up your results when you are ready to now??? How are you going with the testing proceedure??? Im glad you have a very supportive partner, its such a difficult experience going to get tested.

Hope you make yourself at home here on the forum:)
Nay

Hi Nicole,

Its all very well to play ignorant and not put it on the forms for Life Insurance, but can they guarantee that they will pay out in the long run if they discover you knew and didn't disclose it? Then again, you haven't tested and don't know your status so perhaps that is the best time to get covered, before you actually find out yourself.

Hopefully someone will have some answers for you. Welcome anyway to the forum and hope to hear more about you when you are ready.

Love

Debbie

Hey Nic welcome to the forum!
Its always so lovely to meet new people and its great you took the plunge to share your story.   I can hear its all still really new to you guys and the reality of it is still sinking in, so thanks for sharing your story with us, its a privalige to hear it.  

I think talking about it and meeting others really helps, like you say, to feel less alone in it all...and everyone here knows what HD is which is really unique and special.

In regards to the insurance stuff ...it was an absolute headache when i was doing all that....  so i really feel for you going through this process. Noone would insure me initialy, but once i got in contact with a group called IFSA things changed slightly.

here is a link to a discussion we had about insurance a while back...and what happened for me in the end
http://www.hdaustralia.org/viewtopic.php?f=4&t=48

It would be risky not disclosing it, you wouldnt wont to pay into something and feel secure in that and then they pull it out from under you when the time comes that you need it.

It sux though...and it feels like discrimination....and its pretty much the one time someone knows what HD is!!  and of all the unhelpful people in the world its the insurance companies!

Im sorry to hear about your mum and brother testing positive...is your mum doing ok? which state do you guys live in?

I hope the process for testing goes smoothly. Its a hard time...and your very brave for facing this disease head on and planning for your life and children. Theres always someone here willing to listen or answer a question or just to be around when you may need it...so welcome!!

Look forward to talking more
Warm Regards
Michelle x

I was thinking about this insurance thing last night and was curious what would happen if you didnt declare HD and then tried to clam something Debbie. So true who's to say that they will even pay out.

Nicole do you have any cover through your work??? Cos I know when i went to be tested at 18 i had never thought about life insurance, but was going into the teaching profession which would give me cover anyway.

Hi Nic & welcome to you & your partner. Hope you get to realise we are all here to help each other as we all do our best to get through this disease & get the BEST out of life.

  I'm so sorry you had to learn in 1 week you have 2 family members diagnosed  & the emotions you have had to cope with.


  So glad you have a good supporting partner to be with you in your testing process.  It seems to take forever but somehow you do get to the end .  Hope all goes well for you.

Emotions will be all over the place for a while.    How are your Mum & brother coping with their news. Hope you can all support each other     Thinking of you Jan

Hi Nic, welcome to the forum

An insurance company suggested you lie? now thats strange

If your able to pick up a job at a university, the super fund UniSuper offers death and disablement insurance with no medical checks up to a certain amount

Regards
Jason

Hi Nic and welcome

i remember all the insurance stuff when michelle went thru it...

our problem is at the time we found out hubby had HD in his family he started a new job...within weeks of finding out about HD, but didnt see the question on the form

so when it comes down to it i am sure the  insurance company will lok into everything and find out he gave the wrong info...however i am sure they do have a base amount htey pay out anyway, just not quite the sum he is insured for

but we also have a back up policy..one he started years ago before he knew a thing, which pays more than the base amount of the current on..so if the current one wont give us the bigger amount then we will chase teh back up policy

i think its good that you are thinking ahead and trying ti be prepared...hope to see you around more

erica

thanks so much every1 for the ideas and supports that i have recieved over the past week. you have given us some info we hadn't thought about and some angles which we hadn't thought to look at. it def. is a stressful thing that didnt even occur to us when i found out hd was in our family.

my family - i am 1 of 3 in my family, i am the youngest and have 2 older brothers, the eldest has the hd gene, the other has not been tested and not in a rush to make a decision. my mum is 54 and was diagnosed 18months ago ( i think has been symptomatic for a few yrs or so - mild though). at the moment is still independent and lives alone. her drivers licence was suspended 6 months ago - however has since changed meds and has just got an unrestricted licence back. my mum is 1 of 5 she is the 2nd eldest - none of her siblings have been tested or are really showing signs. her father had hd and ended up comitting suicide when he was 74, he also had other medical conditions. i was only 4 at the time - so i do not really remember him and the signs/symptoms of hd. so hd is pretty new to our family.

my blood has been taken, but it has not been sent for testing yet, the geneticist said that once we have found out about insurance to call her and she'd send it to be tested. so iv now also become a little impatient and frustrated as its delaying testing - but in the long run another few weeks/months is not all that long.

it was really hard to find out about mum and my brother in 1 week - but i think i had already begun to see mum as having hd (im a nurse - difficult to stop thinking like 1!!!) so it was mainly finding out about my brother! its difficult - hd is still very much a topic that is not talked about in our family openly. iv started talking to my brother who has been diagnosed a bit more now that i have started to be tested but still an uncomfortable topic. i think the one thing that is on all our minds (well i def know is on mine) is at what stage will mum need care or not b able to live by herself???? what care is out there??? or is it just nursing home??

well, my partner and i have found this forum such a helpful resource. he is as new to this disease as it is to me! the other night we spent a few hours reading every1's stories and talking about it all. thank you every1. i hope i can be as helpful and supportive to every1 as u already have been to me!

nic

Hey there nic,


Just wanted to see how everything is going for you over the last couple of weeks? Hope all is well:)

Nay

Hi Nic,

I'm late in joining in the conversation, but I wanted to say 'hi', and I hope the life insurance issue can be worked out for you. (I had life insurance before we knew about HD being in the family, but as far as I know I can't increase my cover without disclosing my HD status.)

I also have two older brothers, but neither of them have gone through the testing process.

All the best,
Sal (in Vic)

Hi Nic,

I just joined and am currently going through the life insurance thing at 25
My husband is currently putting in an application for life insurance with AXA because we had a baby six weeks ago. The finances guy who is sorting out all our insurance and . talked to AXA (because I just assumed I wouldn't be able to get any) and they said that unless I was symptomatic (and I have to get a doctors certificate to say otherwise) they would most likely give me insurance. They might decide to load the insurance once I put in my application but at least it looks like I would get it . And then once I become symptomatic they can't take it away....

I went through the testing process as soon as I turned 18 and found out I was gene positive. I find it empowering knowing for sure that I will get HD. I am deffinately not the kind of person who deals well with the unknown. It really is full on though, and no matter how prepared you are for what the results will be, it still comes as a shock. So I hope things go well for you one way or the other.

My baby girl is now at risk of HD also. I always imagined that if and when I had a baby I would have the foetus tested and be prepared to terminate if necessary... but once I was actually pregnant I just couldnt face going through a termination because my husband and I really wanted to have that baby and were determined to love and support it no matter how it turned out.

Anyway she is the most beautiful baby and I wouldnt have things any other way

Good luck with everything!

thanks for your post erin, and welcome - i hope u find this forum as helpful as myself and partner. congratulations on the birth of your baby girl!!!

wow - finding out at 18 must have been hard!! i know i want to find out so that i can stop thinking 'what if'. i keep hitting brick walls with looking into life insurance, but i will look into AXA aswell i think. i have made an appt with and insurance broker/accountant for next week so i can finally get some advice! nathan and i are very much not paper work ppl and all the terminology just goes over our heads!!!!!!

well sorry its a short posting, but thanks and hope to hear from u soon!!!

Hi Nicole,

Was just going through some posts on here and noticed that it has been over a month since you were trying to find out about insurance. How did you end up going with it??? I hope that you guys are going well

Nay
xxx

hi everyone, sorry it has been a very long time since i have written! things have been pretty hectic with work and trying to decide on house plans as we hope to start building early next year!!!

well, we tried so many different angles with the life insurance. basically we went to a financial adviser and went through our options. decided on just keeping my basic cover with my super - i cant increase it because they want full family history detials etc. so we have decided to leave it as it is and if i do come back positive, we will set up an investment account or invest in shares for when we need the money!!!!

my blood was sent to melb. to get tested just over a month ago.................... so just waiting for that phone call to go to sydney!!! i thought i wold be a mess waiting for the results but i only occassionaly think about it!!! i think my main coping stratagie has been that i have convinced myself im gene positive, which i know sounds silly but i just have a feeling!!! i think mainly because i am sooooooo similar to my mum. in looks and mannerisims - everyone i say this to tells me that it means nothing - and i know that too - but my gut has me convinced otherwise!!!!

well fingers crossed my gut proves me wrong!!!! now just playing the waiting game!!!!!

hope everyone is well!
nic