Most Patients Live Til 35. How Do I Overcome Depression Knowing That?

[NeverGiveUpOnLife]

I was born with Birth Dysaufonomia and on my medical record they have it listed as familial Dysaufonomia because they are almost identical. As I get older I notice I get sicker, I'm 17 now and I go through times of "remission" where i feel very healthy! Sometimes I forget that I have this illness because of how good I can feel during remission. Then unexceptedly I go into autonomic crisis and then reality hits me on how this illness ruins my life. The doctor said most patients live til 35, I'm scared of dying. My cousin had this and she died at 22 years old. My uncle made it to 29 years old. I want to go to college and earn my doctor of pharmacy degree but in reality I don't know if its possible. I try to stay positive and upbeat so my mom doesn't worry but it's getting hard for me to "fake a smile" I just wish a cure could come soon to heal everyone with any form of Dysaufonomia... How can I stay positive? I'm depressed and I hate this feeling

[k&ajsmom]

What lies behind us and what lies before us are tiny matters compared to what lies within us. - Ralph Waldo Emerson

Have you been able to seek treatment with a specialist to determine exactly what your condition is?? I didnt know there was a birth dysautonomia that was different from familial. Maybe some second and third opinions to see what kind of treatment can help prolong your remissions??

I know these are only words, but you seem to have goals and dreams I think you should strive for. Im not sure what to say in regards to familial dysautonomia, because honestly I am not educated with current up to date info on it. Im sure there is more others can offer. However just because you have had tragedy in your life doesn't mean you are hopeless. There is always hope...and faith. Without tears your soul would not have a rainbow (JCG). Please hang in there and although I cant be much help here, we are all, Im sure standing by you in your fight, emotionally and spiritually. {{{Big huggs}}} -sarah

[sue1234]

I'm curious, and I hope not too nosy, but have you been to any of the big research places for this? My first thought is the NIH? I would think they would have the latest, up-to-date possibilities for FD.

I've read a little on it in the medical literature, and it seems they were talking about how certain vitamin E components helped the genes somehow, something about "fixing" the problem that the bad genes cause. Is any of that something doctors have done for you?

I know, I'm too nosy!

Just keep in mind that medicine keeps advancing in some things rather quickly! Medicine is making leaps in the epigenetics area. This is a good reason for you to keep your hope going that FD will be helped.

[Kellysavedbygrace]

As I read your post I want to reach right across the Internet and give you a big hug. I don't know how old you are now but no matter

what that age I wish I could take the other number, 35, out of your head. Unfortunately research produces some numbers like this that can be helpful in some situations and not helpful in others. But what I do know is that you are not the average patient in those prior studies.

I can just tell from your post that you are already above average in your hopes, dreams, goals- and I say, go for them as far as you can, learn how to adapt (as I imagine you've already become an expert at) and live not for this lifetime, or for this year, or for this month or day- but live for this moment. And make this moment the best it can be.

I've found for me, living in the moment is the only way to cope. If I think too far ahead, I realize the obstacles. If I look back, it easy to see things that I've missed. But if I stay in this moment, focused on taking my next breath when it is really hard or laughing with friends/family when it is really good I am somehow able to get through it. This doesn't mean don't set goals, don't dream or don't plan

big, by all means- make those plans- and adjust them along the way as you have to. If you need to.

I don't have FD but I have a fairly severe case of systemic mast cell disease and autonomic dysfunction. I've had so many days, nights, (more than I can begin to count) I've thought, "I'm dying" that I can really relate to your post as I'm sure many here can.

I'm not sure what your faith is but for me trusting that God is in control is the major force that keeps me from depression. Feel free to PM me if you want to chat more about that- lots to discuss but we try not to get too into that topic on this forum out of respect for all beliefs. Either way I will be praying for you and would love to hear more about your story. Glad you are here on the forum!

[Kellysavedbygrace]

By the way, I agree w Sue that the research has come along way in just the last couple of years. If you haven't been to NYU Langone yet they are some of the best in the area of FD and some of the most cutting edge research is coming out of Vanderbilt now. so, I think there is hope for a cure.

And another thought- sorry if I'm going on too much but just recalled your comment about this: don't fake the smile unless you have to. It's ok, especially in front of your mom, to be honest about what you are feeling. I quit saying, "I'm ok" or "I'm fine" and just put on a smile a long time ago. It's better to be authentic than to be fake. I do try to balance that with finding the blessings in my life and focusing on those. For instance, you could say, "mom, I feel horrible today. Everything hurts and I'm scared of dying but I'm thankful to have you as my mom because I know you love me and care for me just the way I am.". That will mean more and be more healthy for you than holding in how you really feel.

[ramakentesh]

I think kelly gives some great advice.

Your situation does sound tough and I really feel for you. I guess all I can say is that just because others have passed away from similar illnesses in your family doesnt mean you will be as severely effected. If its familial and genetic its possible some had more of the gene than others if you get me.

[FarmerAmy]

I'm so sorry to hear what you are going through. I think I would try to figure out how other people deal with an illness that potentially shortens life span. How do people with MS deal with this?

Do you receive any kind of therapy or counseling? I see a therapist every other week. She is a huge help in terms of dealing with my illness emotionally.

I bet your mom could benefit from some counseling, too. I can imagine that it is incredibly difficult to have a child with a chronic illness. At the same time, you shouldn't have to feel like you need to protect her. You have enough to worry about just taking care of yourself.

My last thought is that nothing in life is certain. I hope that I will regain my health and live to an old age. But I could get hit by a bus tomorrow! I try to remind myself of what makes me happy and what I have to be thankful for right now. I know that I have expectations of what my life should be like and my illness has limited me so that some of these things will not happen (at least not any time soon). I try to work on letting go of these expectations. Which, by the way, is not easy for me! But I do think it has the power to make me happier overall. I am not a Buddhist, but I do find that Buddhist teachings help a lot when we are trying to live in the present moment instead of worrying about the future.

Good luck to you!

Amy

[k&ajsmom]

I agree with all the above comments, ur mom is gonna worry even if you were never afflicted with any obstacles. Thats what us moms do...worry, however use your strenghth to live and not hide. Tears are healing in so many ways. I know Ive had a quite a few meltdowns and emotionally recharged after a good ol cry.

As Rama said, and I totally agree, genes vary person to person. Just cause there is similarities doesn't mean you are identical.

I also rely on faith, although severly tested day to day, I grow stronger through the turmoil, plant your feet upon rocks and have faith in what gives you peace.

[Angela]

i know a girl who had pots since birth: apparantly the dr.'s detected it in the womb in fact, then they slapped a pacemaker in her later in life which was not benificial for her sake. She is alive and kicking (in potsies sense, sit down!!!!), I think you definitely should not focus on statistics cuz who knows all of the people who weren't properly dx'd and are and have lived longer than what they were told!!! just like any cancer or tumor patient who lived a fully satisified life after being told they had 6 months..........any one of us, including healthy people could kick the bucket tomorrow, I can't comprehend and fully feel what exactly you are going thru, and what your drs are telling you, but we have one life, one love ay? (and that love is u....so go to school, do art, write poems/songs..kickbox, try out for the olympics, whatever is your dream:))

[kalamazoo]

I honestly did not know such a rare disease existed, I am so sorry. Sometimes it's hard but remember to appreciate each day youre granted.

[kitt]

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[NeverGiveUpOnLife]

Thank you so much everyone, I'm emotionally feeling better after reading everyone's comment thank you!! I seen a therapist when I was 15 and honestly I think I was given the worst therapist in the world, he kept telling me "always remember people have it worse than you do, some people go through tougher times" - don't get me wrong I completely understand that people do have life worst than I do and I feel so much sympathy for them but I went to him to help ME and MY LIFE and all he did was make me feel like I need to stop "complaining" that's why I stop telling my mom and close friends when I'm in pain or going through autonomic crisis. My mom lost her job because she had to stay home to take care of me and she just got a new job 2 weeks ago since I've been toughing up and taking care of myself more. My mom is also sick with diabetes type 1 and she also has kidney problems so I don't want to focus all on me, I want her to put her health first before mine. She's the only family I have, we moved to NC 2 years ago away from everyone we knew. She hasn't been doing well since my dad left us but I'm trying so hard to take care of her since she did so much to help me through the real hard times. I'm scared of dying before her- she had 2 miscarriages before she finally had me and I don't want her to have to deal with losing her child, again. I do plan on finding a new therapist that isn't rude like the last one- should I go to a chronic illness one or a regular therapist? I've seen many doctors at Dayton children's,Duke children's,Brenner children's, and went to Vanderbilt. I've had good doctors and bad ones, I'm sure you guys can relate to seeing so many doctors so you know how tiring it can be :\ im sorry for writing such a long post but this website is the only place I can vent out my feelings with others who know what's its like. Once again,thank you everyone for the great advice!

[Angela]

think u could probably find a regular therapist. as long as u r comfortable with them and getting resolution, that's the goal.

[jangle]

I would say to focus on the parts of your life that makes you happy, especially during the times you get where you feel normal. Additionally, it is absolutely essential that you get the correct medical support team, the therapist who makes you inhibited to share your struggles is the type of person you need to stray away from. I'm not familiar with autonomic crises, but I'm pretty sure if you're having one you need to be able to tell someone not just as a matter of support but as a matter of health. This extends to your medical team, which I hope you're able to get some very good quality researchers/clinicians who're involved with the cutting edge treatments.

[anna]

Oh this is such a horrible situation to be in, it is truly lovely that you are so caring for your mothers health and wellbeing, but as a mother myself with health issues and 3 children with ANS dysfunction and EDS a connective tissue disorder, I think you both need to be involved in each others wellbeing, try not to do all the worrying by yourself.

You seem very well switched on for your years as many folk with such health matters tend to be, have you found any network of friends that you can chill with maybe more easy via the net have you looked at the NORD support community on Inspire . com. I live in the UK so the care system is so different to yours, are you able to get joint counselling I think you might both benefit from such an input, are you able to access an advocate should you need one.

I have meet a number of young adults like yourself in my journeys on the net I am sure many would benefit from some sort of dedicated support group.

[issie]

I too feel for you and can see that you are a very loving, kind and considerate person. So few in the world who think of others first. That is a very admirable trait and one you should be commended on.

I have been thinking about your post for a few days now and keep thinking I need to bring something up that popped into my head when I read about you and your mother. Since your mother lost a few babies before you and with some of the things that you are dealing with ----it makes my think there could possibly be issues with your Methylation Pathways. It has been found when a person has problems with either getting pregnant or losing babies there is an issue with MTHFR and the way a person utilizes Folic Acid. It has been found that there is a need for the methyl form of folic acid. Along with this problem usually there is a problem with the utilization of B12. There may be high circulating B12 - but, the cells don't take it up properly. It has been found that the methyl form of B12 is a good thing for this. B12 helps with a lot of our nerve transmission issues. Many of us are finding that the methyl form of B12 is helpful and helps with our dysautonomia issues. I could not take the normal form of B12 - I could not break it down properly - but this form seems to be helping and giving me more energy.

Another thing connected to the Methylation Pathways is COMT activity and there can be some genetic mutations with this too. With this, there are issues with the way catecholamines are used in the body. Things like serotonin, dopamine and GABA. I personally, did not have mutations with this. But, do have mutations with CBS which has to do with sulfur. I have to address these issues with sulphur before I can address my mutations with MTHFR. I tried doing it the other way around and made myself really sick. Some of the pathways have to be cleared and in better working order before you can address other issues. I have issues with BH4 or the QDPR pathways. There are also issues with me and NOS that helps process ammonia that forms nitric oxide from arginine. My body turns it into a free radical instead of NO. I use Yucca to help this not happen ---it helps with the breakdown of proteins so that it doesn't form ammonia.

I'm still learning about all this and am no expert in it. It still seems like Greek to me and there are others who understand it better then me. But, I'm learning and also seeing how genetics and mutations in genes play a big role in what we all have going on. If we can figure out where the dysfunction is and support our bodies where there is an issue. We "MIGHT" can get a little more function from these imperfect bodies that we have.

I know this will all sound like Greek to you. But, if you can find someone to test some of this for you and your mom ---there is a chance that both of you would benefit from knowing where the mutations are and then pursuing what to do about it.

"HANG IN THERE, Darlin" You are a strong girl and you still have life ---live it to the full and make every moment one to remember. One thing I live by is ---if there is something that needs to be said --say it. If you love someone --tell them. If you feel sad --show it. Emotions and feelings are a part of experiencing life. We all have good and bad times. We should never take any one forgranted ----our friends are the true treasures in our lives. Possessions mean very little. But, the people around us is what makes our worlds turn. People should know what others feel about them while they are alive ---not when one is being remembered after that life is gone. Life is too short, we don't need any regrets. I can truly say that if I ceased to exist tomorrow ---I would have no regrets. I have lived my life to the fullest. There is only one thing that I have not yet done that I want do ---I have ALWAYS wanted to go to New Zealand and Australia. I hope one day I will be well enough to do that.

Issie

[Chaos]

You sound like an amazing young woman. Your mom is blessed to have you for a daughter and you are blessed by having her for a mom it seems.

As others have mentioned, none of us truly know how long we have to live. You have something written on a chart or in a book about you that is a statistic, but that's not about you personally. My husband has lost two brothers to sudden accidents where they were there one minute and gone the next. Statistically they should still be around, but they're not. I can't tell you how many people I've met thru the years who were told they wouldn't live 6 months and were still living 5, 10 or more years later whether they wanted to be or not. So really, I've personally had to come to terms with "when it's your time, it's your time".

Like Issie and others have said, the only way, I believe, to have a truly meaningful life is to live every minute to the fullest that you can at that time. Live without regrets. Do what you can, within your abilities. You sound like you have great goals, so go for them. It wasn't that long ago, in historical times when hardly anyone survived beyond their 30's. But people still did truly amazing things and made HUGE contributions to society. (Mozart is one who comes to mind in particular. Merriwether Lewis - of the Lewis and Clark Expedition- is another.) So grab life with both hands and do what you can with it. It's not easy with the challenges life is handing you, but when you have those periods where things are going well, make the most of it- in a balanced way that won't jeopardize your health further.

Definitely look for a good therapist. They are sometimes hard to find, but a good one is well worth the effort. A bad one does more damage than good.

Best wishes to you. Know that you can always come here when you need some support from others who "get it".

[flyingsquirrel]

If you have FD, you might want to try to get followed by the FD center at NYU Medical Center (it's still open even though the rest of the hospital is closed). This is the only FD center in the US so they are used to working with people who are not local.

FD runs in my family and I have several relatives with FD. My cousin's parents were told that she probably wouldn't live past her early teens, but she lived a full life into her late 20's. There is a much better understanding of the disease now and better treatment options, but they still can't predict who will have complications and who won't.

Get a good medical team, take care of yourself (physically and mentally), try to get into some clinical trials (phosphatidylserine looks promising), and don't miss out on doing anything because you think it's too much of a 'long term' plan.

[Canadiangirl73]

I echo what others have said. Medicine does make leaps, so don't give up! It is very thoughtful of you to try to spare your mother's feelings but by keeping up appearances, you must get tired. Also, as a mother myself, I can assure you your mother is already worried about all aspects of your life. That is just what mothers do! Your emotional well-being is no exception. I'm sure sharing your thoughts and feelings with her would only bring you closer and make you feel less lonely. As far as statistics go, well, that is just what they are, numbers. Doctors often rely on those solely and forget every person is different. A friend of mine very recently passed away. She also had a genetic disease from birth for which there is no cure: cystic fibrosis. She had a double lung transplant 16 years ago thanks to which her life was extended. Sixteen years is amazing considering those infamous statistics. Things that kept her going was her strong will to live and to never take no for an answer, even if that answer came from a physician. She lived her life to the fullest, within her limits of course, but she also allowed herself to sometimes complain about her symptoms. She knew who to share her sorrow with as well as her triumphs. That is therapeutic. Allow yourself to be yourself. Show all the facets of your personality and your soul, but do it around people who will give you compassion and understanding. No one, even well, is always cheery. That is humanly impossible!