Re: BPES in older people and its effects.

March 23, 2011

Dear CarlI read your post yesterday, and have been thinking about it.I am 50, and I have met about 4 people of our age group, and we didn’t really talk about it the way you brought it up in your post. I think the question asked is a hard one, and I can only speak of personal experience.When I look back at things that have upset me (am using a word that’s very general … upset) and try to figure out WHY I am upset, I know that some of it is down to other people not being accepting of difference, and behaving in an immature way. This is much easier to overcome when you are older, and it today’s world. I think that nowadays people’s attitudes are much better than they were 40 years ago.If anything, I am more bitter, annoyed, angry, upset than they type of symptoms that you are experiencing. But it may be that for me, that’s how it has turned out. I am not saying that right now I am bitter, annoyed and angry, rather, looking back over my childhood and early adulthood, those have been the emotions - evident, but not strong.A friend of mine who is a psychiatrist told me that at times it is normal to be anxious, hurt, and feel these quite strongly. The important thing is to recognise that when an incident occurs they are normal reactions, and do something about not making the situation worse, and work on improving them. That was really helpful for me, because I thought about it logically, and made a plan. Of course, life isn’t always that easy, is it?Because I am not a medic, it would be totally wrong of me to advise you. Please think of this as me simply sharing my experience. The other thing is Carl, it very tough to be totally open about these things in this semi-public environment. I thought quite hard about my reply, and it is rather short. If I was have a cup of tea with you, then no doubt we would both share more. It is very good that you brought this subject up, because although it may not apply to some people, it will make them think a bit about it. Take careShireenLondon, England From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of carlmitchell44Sent: 22 March 2011 01:24blepharophimosis Subject: blepharophimosis BPES in older people and its effects.I am new to the group. I am a 46 year-old male with BPES. I have had all my surgeries and feel that they were successful. My concern now, especially after doing research, is the psychological and other physiological effects we are and will be experiencing. I have struggled with severe anxiety and depression. This leads to irritability and physical complaints. The research I have found says we struggle with psychological symptoms. If not treated with antidepressants it can get quite harsh. I believe I am logical and am capable if thinking threw negative thought. So, I think the depression's impetus is physical. Leading to physical symptoms as well, the fatigue, nausea, joint and muscle aches, etc. Anyone have any knowledge of what happens to us older BPESers. What to expect and is it related to our syndrome or is it an other issue. Thanks, Carl

March 24, 2011

Hi Carl,

As a BPES-enhanced 50-year-older, I can sympathise. Like Shireen, I've

also spent a day or so thinking about your interesting question before

replying.

I think anyone growing up " different " (whether different due to BPES

enhancement or something else), is going to struggle with the

psychological effects of both just being different in itself, and of the

reactions & behaviours of others - especially in our younger years. I'm

inclined to think though, at least based on my experience, that we

mostly get over those early problems and move on, and get pretty much no

reaction from others these days.

Of course, those early struggles shape our approach to life and how we

deal with others all our lives, and how we each are shaped is a fairly

individual thing.

I'm not convinced, though, that BPES itself is necessarily likely to

make us more prone to such things as depression or anxiety or vital

exhaustion, etc. (at least, I never considered that my depression or

anxiety or vital exhaustion could be BPES-related), outside of our more

difficult early (childhood and teenage) years. Given how common those

things are across the general population these days, at least in our

western societies, it seems like it'd be difficult to isolate BPES as a

clear contributor itself (but one never knows, I suppose). I know I have

lots of other things I blame rather than BPES!

Rob W

Oz

March 24, 2011

Shireen and Rob, Thanks for your replies to my concerns. I agree with both of

you, certain amounts of depression and anxiety are common in most people. The

BPES connection could be possible but not evident.

I have events in my life and genetics that have made me prone to the emotional

disturbance. But as Rob had said, as you get older you process and move ahead of

the events and level off. I believe I have made great strides. The perplexing

part for me is the physical connection. When I have these bouts my physical

complaints are high. Making me think the physical responses are related to the

emotion outcomes. Which comes first I have not figured out. With that said and

knowing BPES is a syndrome and physiological, could there be a connection. But

having only met one other of us and having a three generation gap in PBES I have

no reference. But what I got from you two was that you do not experience the

physical piece, so I am not going to directly tie it to the PBES.

Its been a great help to me to have this discussion. I do not feel so isolated

in my journey.

Thanks, Carl

>

> Dear Carl

>

> I read your post yesterday, and have been thinking about it.

>

> I am 50, and I have met about 4 people of our age group, and we didn't

> really talk about it the way you brought it up in your post. I think the

> question asked is a hard one, and I can only speak of personal experience.

>

> When I look back at things that have upset me (am using a word that's very

> general . upset) and try to figure out WHY I am upset, I know that some of

> it is down to other people not being accepting of difference, and behaving

> in an immature way. This is much easier to overcome when you are older, and

> it today's world. I think that nowadays people's attitudes are much better

> than they were 40 years ago.

>

> If anything, I am more bitter, annoyed, angry, upset than they type of

> symptoms that you are experiencing. But it may be that for me, that's how it

> has turned out. I am not saying that right now I am bitter, annoyed and

> angry, rather, looking back over my childhood and early adulthood, those

> have been the emotions - evident, but not strong.

>

> A friend of mine who is a psychiatrist told me that at times it is normal to

> be anxious, hurt, and feel these quite strongly. The important thing is to

> recognise that when an incident occurs they are normal reactions, and do

> something about not making the situation worse, and work on improving them.

> That was really helpful for me, because I thought about it logically, and

> made a plan. Of course, life isn't always that easy, is it?

>

> Because I am not a medic, it would be totally wrong of me to advise you.

> Please think of this as me simply sharing my experience.

>

> The other thing is Carl, it very tough to be totally open about these things

> in this semi-public environment. I thought quite hard about my reply, and it

> is rather short. If I was have a cup of tea with you, then no doubt we would

> both share more. It is very good that you brought this subject up, because

> although it may not apply to some people, it will make them think a bit

> about it.

>

> Take care

>

> Shireen

>

> London, England

>

> From: blepharophimosis

> [mailto:blepharophimosis ] On Behalf Of carlmitchell44

> Sent: 22 March 2011 01:24

> blepharophimosis

> Subject: blepharophimosis BPES in older people and its effects.

>

> I am new to the group. I am a 46 year-old male with BPES. I have had all my

> surgeries and feel that they were successful. My concern now, especially

> after doing research, is the psychological and other physiological effects

> we are and will be experiencing. I have struggled with severe anxiety and

> depression. This leads to irritability and physical complaints. The research

> I have found says we struggle with psychological symptoms. If not treated

> with antidepressants it can get quite harsh. I believe I am logical and am

> capable if thinking threw negative thought. So, I think the depression's

> impetus is physical. Leading to physical symptoms as well, the fatigue,

> nausea, joint and muscle aches, etc.

>

> Anyone have any knowledge of what happens to us older BPESers. What to

> expect and is it related to our syndrome or is it an other issue.

>

> Thanks, Carl

>

March 24, 2011

I think some medical professionals can under-rate the interdependencies

between physical issues and psychological factors. In my case, I've

recently (after my second heart attack last June) explored the research

linking vital exhaustion to coronary heart disease (well, myocardial

infarction in particular). The current researchers seem unclear as to

whether reduced ejection fraction (by which they measure heart damage)

leads to vital exhaustion, or the other way round, or both (i.e. a

vicious cycle/circle or feedback loop between the two) - but they are

certain that there is a link of some kind. Although my cardiologist is

careful to toe the official line (i.e. no link, despite the research),

my complete lack of any other risk factors (and my desperate desire to

retire!) convinces me otherwise.

So hang in there, Carl, you aren't dreaming (although BPES-enhancement

isn't a factor).

Rob W

Oz

March 29, 2011

I have a son that is almost 13 and in the throws of Peer Ridicule and has been

since day one. You would think that 40 yrs later than what the people in your

age range lived with, it would be a little better, but it really isn't. All I

can do to help my son is to let him know that the ones that like to make him

feel bad about something out of anyone's control, aren't worth his time. I

spend more time at the school complaining about bullies than I do checking into

his school marks. It's sad really, but it's our reality. I was the " fat " kid

in school, so I grew up being teased, but I have lost 150 lbs and people are

100% different towards me. Bleph people don't have that option. I see how sad

he is somedays. I can read it in his face. His sad is most people's angry.

He's now starting to question whether what he sees in a mirror is what others

see. He has nightmare of one eye falling way down his cheek while the other is

so small that he can't use it at all. My job as his mom, is to keep him as

happy as I can in this life. I don't want him to grow up with a permanent deep

seated hatred for the human race because of his childhood. Does it ever start

to play LESS of a role in life than it does as a teen? I know it's not going to

get much easier anytime soon. In my experience so far as the unaccepted kid and

now the parent of the kid with " small eyes " , I too find it hard not to always

harbor negative energy towards the kids I grew up with that teased me or the

kids that I know tease my son. I look at these people and wonder if they could

even imagine how many times they make another person want to " JUMP " just because

they felt it was their right to treat people so badly. I am scared that

someday, he will " JUMP " and my hubby and I won't be there to catch him. What

was it that helped the adults get through this with atleast some semblance of

sanity?