HRT & Disability

[EmmaMcAllister]

Disclamer: I know that all of these questions are best answered by medical professionals. I'm not looking for hard advice, I just thought a few of you might have some insight!

So, as I've said before, I'm physically disabled. I have Spinal Muscular Atrophy, I'm in a wheelchair, have no significant use of my left arm and just enough strength in my right arm for things like eating, computer usage, etc. I'm 4'8" tall and weigh about 40lbs. I know, I'm skin and bones. I'll be meeting with a dietician to make a weight gain regimen. I'm hoping to end up somewhere between 60-70lbs. Maybe more.

What I'm wondering:

1. What is the likelihood I'll be rejected for HRT based on my low weight?
2. How would breast development be affected by a low weight? My mother was a double D, so I'm hoping for a B cup.
3. How severe is the muscle loss on HRT? Enough to affect usages of my right arm? Would exercise help?

Thanks in advance!

[Jamie D]

I think that depends on what type of SMA you have.

[EmmaMcAllister]

Type 2.

[Jamie D]

You are in uncharted territory here.  My SO, who is a special education teacher, had a student with SMA (as I recall).

The student had a one-on-one aide, and graduated to middle school.

You definitely want to preserve muscle mass.  You really need to get the opinion of a specialist.

Without body fat, you will have a tough time with adipose breast tissue.

[EmmaMcAllister]

Thanks for the feedback, Jamie. I had assumed that breast development will be difficult, but I'll be trying to put on as much weight as I need. If augmentation is necessary, hey, just one more surgery.

I'm a little less concerned about muscle loss, as long as it doesn't affect my respiratory or cardiac function. My arm strength will waste away ANYWAY, I'm just wondering how much I can mitigate the negative effects with exercise.

[Jamie D]

Thanks for the feedback, Jamie. I had assumed that breast development will be difficult, but I'll be trying to put on as much weight as I need. If augmentation is necessary, hey, just one more surgery.

I'm a little less concerned about muscle loss, as long as it doesn't affect my respiratory or cardiac function. My arm strength will waste away ANYWAY, I'm just wondering how much I can mitigate the negative effects with exercise.

Don't ever lose your dreams, Emma.

Getting stronger can't hurt.  I'm in a 12-week cardio-rehab program right now - hoping to avoid getting my chest cracked open again.  The latest heart complications have thrown everything off for me.  So I understand your desire to move past limitations, to the best of your ability.  That's what I am trying to do too.

[Catherine Sarah]

Hi Emma,

Well one thing is for sure. The news is all good.

As Jamie said, definitely sailing in uncharted waters. But then again, aren't we all?

My thoughts on your wonderings would see,

1) With an attitude like yours, I know you don't take no for an answer. If one Dr. rejects you, you'll seek another who knows what they are talking about, and admit you to a programme.

2) Genetics really plays a curved ball on lots of things. But my hope for you is something natural, but, as you say, BA just another surgery. And that will boost your morale to over the moon status.

3) Well I guess, exercise won't go astray.

It will be interesting to see what actually does develop once you are on HRT. I've many a person admit long term medical conditions have been cured through HRT. Generally skin related, however I have heard of others. I'm not saying HRT is going to be the "be all and end all" for you as you'd be aware.It would just be interesting to see what does change.

Keep up the awesome attitude and job you are doing.We know you can do it.

Huggs
Catherine

[EmmaMcAllister]

Don't ever lose your dreams, Emma.

I won't!

1) With an attitude like yours, I know you don't take no for an answer. If one Dr. rejects you, you'll seek another who knows what they are talking about, and admit you to a programme.

My first stop will be Sherbourne, which has the best reputation among the Ontario TG community. I'll be avoiding CAMH like the plague. I'm not sure if there are many doctors in my own city with experience in this area.

2) Genetics really plays a curved ball on lots of things. But my hope for you is something natural, but, as you say, BA just another surgery. And that will boost your morale to over the moon status.

My goal is to stay natural, and I've never had a desire for a huge chest. I'd just like a bust period! Hopefully I won't need to turn to BA, but we'll see.

3) Well I guess, exercise won't go astray.

I'm sure that exercise will do no harm, I'm just wondering how much good it will do. I'm going to start on it anyhow, just to put myself in the best possible position.

*hugs* Thank you both!

[MadelineB]

Hi Emma,
I don't know if any of this is of help:


Estrogen can make it easier to hold on to body fat or add to it, but the effect isn't huge. Nutrition is the biggest factor by far. I would consult with a nutritionist who has experience with your kind of SMA. The goal is to be the healthiest woman you can be. Nutrition also supports the development and maintenance of your muscles.


Exercise is key with maintaining or building muscle mass. Muscles develop when used and they atrophy when not used. If you are dealing with SMA, you may benefit greatly from physical therapies or occupational therapies that put your muscles to work regularly even though they may not be getting the nerve signals that let you exercise them unaided. Male hormones lead to a bulkier style of muscle development than female hormones do, but this week's olympics will show you that female hormones do not prevent strength, endurance, and fitness in any way if all of the muscles are getting used and put through their paces.


You may already be doing therapies, treatments, or exercise regimes to avoid deep venous thrombosis and pulmonary embolisms; that will be even more important on estrogen therapy, whether that is mobility exercises or therapies, those compression bootie thingies that inflate and deflate periodically, or medication. My doctor is fanatical about avoiding DVT, PE, and stroke because she knows the risk is higher for us on high E. A good HRT clinic may be of help in making sure you get your hormonal treatments in the safest format for you.

[EmmaMcAllister]

Thank you, Madeleine. It does help!

Estrogen can make it easier to hold on to body fat or add to it, but the effect isn't huge. Nutrition is the biggest factor by far. I would consult with a nutritionist who has experience with your kind of SMA. The goal is to be the healthiest woman you can be. Nutrition also supports the development and maintenance of your muscles.

Interesting point, I wasn't aware that Estrogen could have an impact on weight gain. My goal, of course, is to put on as much weight as possible before starting HRT, but it's nice to know that it might help me to maintain a healthy weight a bit easier. It'll be a juggling act, as I'll need to find a weight that's healthy, conducive to HRT, but not too heavy for my weak muscles or for my caregivers to manage. I'll be meeting with my family doctor in a couple of weeks, and I'll get him to refer me to a dietician.

Exercise is key with maintaining or building muscle mass. Muscles develop when used and they atrophy when not used. If you are dealing with SMA, you may benefit greatly from physical therapies or occupational therapies that put your muscles to work regularly even though they may not be getting the nerve signals that let you exercise them unaided. Male hormones lead to a bulkier style of muscle development than female hormones do, but this week's olympics will show you that female hormones do not prevent strength, endurance, and fitness in any way if all of the muscles are getting used and put through their paces.


You may already be doing therapies, treatments, or exercise regimes to avoid deep venous thrombosis and pulmonary embolisms; that will be even more important on estrogen therapy, whether that is mobility exercises or therapies, those compression bootie thingies that inflate and deflate periodically, or medication. My doctor is fanatical about avoiding DVT, PE, and stroke because she knows the risk is higher for us on high E. A good HRT clinic may be of help in making sure you get your hormonal treatments in the safest format for you.

Great points!