This Genetic Disorder

[Ernie]

Hi everyone,

[morgan617]

Oh Ernie, I am so sorry! This disease is so awful and sometimes it never seems to end. I am glad your brother is in the hospital where he belongs and the clots will be dissolved soon. All meds come with side effects and warnings, but sometimes the good outweighs the bad. Only you and your doctor can decide whether you should stop these meds that help you.

You have been on them for awhile, and not had problems, so that is hopeful. Please keep us updated on how things are going as you can. morgan

[Tammy]

Oh Ernie, I am so with you. I have thought that myself, as to why I got dealt into a family with numerous health issues and then I look around and see all these healthy families just enjoying life and completely unphased. The only comfort I find is that even though my family is unwell, we are a very close knit family and stick by each other in all the downs in life and hope this is the case with yours. If so, that is such a blessing and all.

Take care,

Tammy

[Lukkychrm42]

I'm so sorry. I'm glad they caught the embolisms, and I hope he continues to improve on treatment.

I will try not to say anything trite and unhelpful, but I will say that I'm still sending my love and heaps of hugs.

I know you're scared and angry- I would be, too.

I do hope you're seeing someone you can talk to- that's not an insult! You've got a ton to deal with, and I'm amazed at how well you handle it.

Also, I think it may be worthwhile for you to channel this into an opportunity. I think you should write your story and get it out as widely as possible- I'm talking magazines, pharmaceutical companies, MPs, etc... and make people listen. Spreading the word brings awareness, and awareness facilitates research, which could lead to treatment. That goes for all of us, but you're obviously not some American making a mountain out of a molehill (something that is often implied if not stated outright!) and if you can get your doctors to back you up, there could be some real progress. (And don't worry- it can be succinct and straight to the internet!) Hyperadrenergic POTS, being so much rarer, seems even less focused on, and that's terrible. (If I can help with this, I'll do anything on your behalf.)

Anyway, I'm always thinking of you and your family.

Please let me know if there's anything I can do for you!

[Rachel]

Dear Ernie,

I'm sorry to hear about what is happening with your brother; that is really scary. It must be so hard to watch your brother go through everything. I'm thankful to hear that he made it through okay. But knowing that he (and you, and other family members) are still at risk is scary. I wish you didn't have to go through all of this.

Rachel

[MomtoGiuliana]

Ernie--I am sorry to hear about your brother. A clot is very scary. I am glad he has gotten excellent treatment and has improved. It must be scary to know this risk hangs over you and other family members as well. I am sorry that you have to face this.

Please let us know how he is doing.

Katherine

[Sophia3]

Ernie

I am sorry to hear about the scare your brother is in.

I remembered when your brother died a few years ago.

To be on meds that give you some quality of life but are also risky is something only YOU can decide.

I hope your brother has a full recovery and that you find peace in whatever decision you choose about your medications.

Be nice to yourself.

[pat57]

My sympathies.

I would like to echo Lukkychrm. Find someone or some support group, its no good to bear such alone. Talking things out is a huge help. Unfortunately

I think cyber groups fall short, and I know you have limited physical resources.

When I was going through a nightmare divorce with a 6 and 7 years old- friends to talk to kept me sane.

[JenniferInOhio]

I'm sorry. That is a lot of weight on your shoulders.

[dizzygirl]

so sorry to hear about your brother.. i hope that he is diong better now.. I know that you are dealing with alot of medical issues your self ernie.. and have been pretty gosh darn sick...you are dealing with medical issues and autonomic issues that reach a level that the "majority" of us on here DO NOT experience...you are a rare bird after all :wub: .... i know that treatment has been a long and tedious process for you.. and im so glad that you have found something that is finally working for you ernie..

I pray that you do not face the risk that can come with your medication and that it continues to help you and give you back a quality of life that you so very much deserve and want...

i imagine that its a heavy and scary burdeon to carry.. with the genetics involved in your family... But like i said I pray that your the exception... and dont have to face things like waht you brothers have and did go thru.. again i hope you brother os on the mend and feeling well..

hang in there ernie!

BIg HUGS from PA

much love

linda

[Maxine]

Ernie--------

I'm so sorry to hear about your brother having this awful disorder also. I know you said it's in your family------------it's just not fair. I hope that he gets good treatment from the doctors he sees, and that none of them give him any trouble.

It's bad enough to have this disorder, and worse when you get Docs that don't believe you. My niece and her husband both have the blood clotting disorder also, but they don't have dysautonomia. They can get treatment---(blood thinners), and they should lead normal lives. Her husband has the more serious type.

Thank God the blood clots were caught, and that your brother survived. The medications he is on will do their work, and the clots will disolve. He may need to be on blood thinners the rest of his life.

You will both be in my thoughts and prayers.

HUGS,

Maxine :0)

[doctorguest]

Ernie, have you been tested for this clotting disorder and have you been told that you have it? Just want to add that even in the disorders with the strongest chance of genetic transmission - i.e. autosomal dominant - there is a 50% chance of inheriting it. Thus, if you haven't been tested for it, there is still a good chance that you don't have the disorder that your brothers had.

If I were your doctor, I would test you for all clotting disorders with all of the tests that we have available so that you could make "the right" decision with respect to Procrit, using the best evidence - i.e. the results of the clotting disorders tests. Maybe you can discuss this issue with your doctor. Good luck!

[Mrs. Burschman]

Ernie,

Sending a hug your way!

[pastordari]

I'm thinking about you and your famly, Ernie.

Dari

[Ernie]

Hi,

Thank you for all your support and compassion.

[lalalisa]

Ernie,

Can I pray for you? You have so many things going on with you and your family right now. Thanks for sharing and letting us know your struggles.

Also, please let us know when you hear back about your genetic testing.

Lisa

[flop]

Ernie,

I was so shocked to hear of the blood clotting problems that have affected your brothers. It sounds as though your family have a complex and rare genetic disorder. I think that you are wise to seek genetic advice about the clotting problem. I wonder if it is truly part of your family's POTS or if it is a separate genetic problem and your brothers are unlucky enough to have both?

I know that is of little consolation to you but I wanted to reassure other members that there is usually no association between POTS and clotting problems.

I'm sending healing thoughts for your yonger brother's continued recovery and wish you all the best for your appointment with the geneticist.

Take care,

Flop

[Ernie]

Hi Lisa,

Yes you can pray for me. Thanks.

Thanks also for the healing thoughs.

[pearsjon]

ernie,

i am so sorry for your loss and the worry and agony you are going through. i also wanted to thank you for sharing your story, as i know it was difficult to do. i applaude your attitude, it takes a great deal of strength to have that. i will pray for you daily.

and send big hugs .

[P SUDIK]

Ernie, I am keeping you and your family in my prayers and sending you a huge HUG,Pat