Thread for younger Patients

[sgomez]

Hi,

My name is Santiago, I'm 24 and I'm in remission for the second time(first time I was 18) for AA. Having read many of the medical books and the like I always see that that:1. the usual age for aquiring(idiopathic or other) AA is a young adult and 2. I haven't met one single young adult with AA. Although the illness has caused my career to take a short detour I have on the whole been quite lucky, nevertheless, I wish not only to start a thread on this site for young adults but for teenagers as well.
Illness is very difficult, and oddly enough, at least in my case, I seem to have problems relating to others who haven't experineced siginificant hardships in their lives. That is not to stay that I don't relate to people, but more to say that nobody, even family members, ever seem to understand how difficult the process and/or illness is.

In effect, hopefully we can start this thread to address many of the issues which affect patients. In my case, rejoining society "just like that" has been very difficult ans so I wonder if others, in my age group or not, have suffered from this readjustment. I for one have found it extremely difficult.

Best to all,

Santiago

[Neil Cuadra]

Hi Santiago.

There are AA patients in their teens and 20s. I've met and talked to some of them at the annual Patient & Family Conference.

There's no good age to have aplastic anemia, but it's especially hard for teens and people in their early 20s when a disease like AA strikes just as they are going through adolescence, separating from parents, heading for college or new jobs, and beginning careers and marriages as they start their lives as independent adults.

These are the years when people usually have the best health and fitness of their lives, and suddenly needing serious medical care and once again being dependent on other family members can turn the tables on the normal progress to adulthood. When your life is threatened and you spend much of your time fighting a disease, it can have a major effect on your confidence about having the life you planned.

If there's any upside to dealing with AA when you are in this age range, it's that your health is likely to be excellent, other than the AA, and that can give you the lowest risks from treatments. When my wife was diagnosed with AA at age 41, one of the subtle messages we got as we studied treatment statistics was "too bad she's not 19."

There are unique concerns for these patients, such as how to complete their education and start their career paths while dealing with AA, limits on the physical activities they are used to, and the effects of treatments on their appearance and future fertility.

Like you, I encourage young adult patients to talk to each other, and this is one place where that can happen. The AA&MDSIF 2007 Patient & Family Conference will be in Las Vegas this coming August, and for those who can attend it's a great opportunity to find other patients, talk to them in person, share information, and form friendships.

[sgomez]

Hi Neil,

Thanks for your your good words. I guess that when I say that I haven´t met any AA patients around my age that is an understatement, since I haven´t met AA patients of any age. My only point was that I would very much enjoy meeting AA patients that are around my age to see how they have coped with being sick and so forth, or at least speak with others in a forum with others around my same age. There really is no best moment on life to get sick but I would definitely love to converse with others around my age.

You are right in stating that the great thing about being young is that your odds are so favorable.I agree completely and thanks for your positive outlook. I´m in Montreal so I wish I could fly out to Las Vegas but that isn´t in my budget so thats that. Nonetheless, thanks for your support.

Best,

Santiago

[Neil Cuadra]

It's too bad that the Patient & Family Conference is in the wrong area for you this year. They move it around the country from year to year, so it's likely to be nearer the east coast next year.

Another suggestion: Contact the AA&MDSIF Global Support Network and ask if there is someone near to your age in the program. The program was set up to let patients network with other patients, and they might be able to connect you to someone. If you become one of their volunteers, they would refer other patients to you as well.

For contact information, see the "To talk to a volunteer" section on that page.

[Lisa V]

Santiago,

I know that several of the posters on the Aplastic Central forum are college students. Occasionally we'll hear from a teenager too, but more likely with kids and teens it's the parents that post. Still, it could be a chance to explore some common issues. If you don't get a response here, you might check out that forum as well.

http://aplasticcentral.com/test/toas...n=topics&fid=2

[sgomez]

Hi Lisa,

Thanks for the tip . I'll check it out.


best,

santiago

[Mike O]

Santiago.

I am 22 and was diagnosed with SAA when I was 19. I am currently actually feeling good, although I am drug- and transfusion dependent. I know that everyone who has AA probably thinks that it's hardest on them for some reason, but I've also felt that my age makes it especially hard to deal with such a condition. Sometimes I feel like... kids have their families to take care of everything, they probably don't have to make their own decisions about their care, and they don't have to worry about work or living situations or.. much of anything. And then adults are at least settled in their lives, may have careers that they can return to, etc. I, on the other hand, feel like I'm totally in jeopardy. Before diagnosis, I had a 3.8 GPA at a university whereas now I'm struggling just taking enough classes at a community college to be 'full time' so I can stay on my parent's insurance.

I also feel like most of the people I grew up with are at a really exciting time in their lives and they're starting to graduate from school and get married and all the normal young-adult stuff. I also know what you mean about difficulty connecting with people: especially those our age. I find it hard to even pretend to care about unimportant social 'crises' that my friends talk my ear off about. On the other hand, most of them are completely oblivious as to what it is that I go through. It's extremely difficult to even explain one hard day to someone who doesn't understand AA medical lexicon. It's also nothing that anyone really wants to hear...

I'm sorry for rambling on so much; this is just an issue that I guess I've been needing to vent about for a long time.

[Andrea Pecor]

Hi,

I've been reading your posts about being a young adult with SAA. I was 24 yrs old in 1980 when I was diagnosed. I had just graduated from college and was about to embark on my life. Aplastic anemia brought that to a screeching halt. I had to leave where I was living in upstate NY and go home to live with my parents outside of NYC. It was very difficult for me to give up the independence it had taken me 6 years to establish and I resented it. But I didn't have a choice. In 1980 things were very different than today - BMTs were available only to patients with matched siblings (I am an only child), the National Marrow Donor Program did not even exist yet, and there was no internet to search for information and resources! I went to the library and checked out both books that mentioned aplastic anemia but I didn't like what they had to say and decided my life was not going to go that doomed route. I had ATG the first time as part of one of the early clinical trials out at Fred Hutch in Seattle. I won't bore you with all the details - you can read it in my personal profile (Andrea Pecor's personal profile) here on MarrowForums.
I want to reiterate what someone else posted about it being an advantage to being diagnosed young when one is presumably healthy otherwise, as it increases the chance of a good response to treatment and keeps open the possibility of a bone marrow transplant.
I have been very lucky and responded well to ATG on five separate occasions over a 22 year period. Although AA significantly altered the course of my life, I have spent more time being healthy than sick. I have come to regard the disease as something of a gift which reminds me regularly of the things in life that are important. To a degree, I can "not sweat the small stuff" because it's all small stuff! I know it has made me stronger, more self-confident and I am so pleased when I can help others through my association with the AAMDSIF and Marrowforums.
I would be happy to answer any questions or share with you how I have dealt with some of the challenges that have faced me over the years.

wishing you all the best,
Andrea

[sgomez]

Dear Mike O and Andrea,

I'm happy that others have wanted to discuss this a little. Andrea hits the nail on the head as far as perspective and attitude, which as we all know is most of the battle. I value the ability to be treated in a first world country with the benefits of modern medicine which have advanced incredibly over the years.And it is important to remember that little things in life are just "little things". It's not that I complain over the fact that I am sick and others my age are simply running around enjoying their 20s as they should.But it is seems that, along with most things in life, there are two sides to the issue. Having SAA has made me realize many incredible things about life, my family, my friends and other wonderful human beings at an early age. Yet at the same time it becomes difficult to hang out with people your age and see at what a different place you are at in your life. I do know that I have grown a lot because of my battles. But the hurdle of illness spreads through every aspect of your life and this seems particularly difficult to deal with many times.

Personally, I had to give up my dream job with the United Nations in South America and move to a new place where I know very few people and i am currently trying to find a new career path.I surely cannot imagine what it would be like to fall ill and have children depending on you(I'm sure that stress is even worse than anything I am going through).

In the end, I think that Andrea is where she is because she has truly accepted the reality of illness. I don't know whether or not it took twenty years to get there. All I can say is that adjusting to life after these completely destabilizing has been incredibly difficult. Many times when I meet people I don't know whether or not to bring up these issues. Or when I meet a girl I'm interested in, I always hesitate to say anything about my condition since it is a pretty big downer(even though I speak of it with a light tone).

Anyway, hopefully by talking about these issues here we will all get to where Andrea is. Thanks for the feedback. I hope we can keep venting about these issues here on order to grow and accept ourselves and our situation in the world.

best regards,

Santiago

[Andrea Pecor]

Santiago,

Thanks so much for the nice words. It didn't take me 20 years to know that AA was going to be with me always, or in fact that it would in some ways come to define me. I don't consider my attitude an acceptance or resignation to any reality. My attitude has never changed from the day I was diagnosed. Some called it denial, others ignorance but I have always known, in my heart of hearts, that today is not the day that AA is going to take me home, no matter what twist or turn develops. Tomorrow could tell a different story, or I could be run over by a truck. I live my life on my own terms (which my doctors don't always condone), and consider that I "coexist" with AA. Many of my dreams did not come true, either and I live with that sorrow. But so many good things that I could never have imagined, have come true. Reaching the ripe old age of 51 does bring some perspective that is not available to one who is 19 or 24.

That said, I think you have a wonderfully mature view of things and would expect you to do tremendously well, based on your attitude. You will figure out how to fit with your contemporaries despite your different challenges. I am certain that you are already a better person for it.....and when the right girl comes along, it won't even be an issue.

best,
Andrea

[sgomez]

Andrea,

Thanks for the good words!!

Best regards,

Santiago

[sprocket]

I was diagnosed at 23, transfusion-dependent until 25, and am now 27 and living "normally". It was a really rough 3-ish years, and I definitely do sometimes feel like I missed out on a lot during that time and was "robbed" of a chunk of my 20s. On the other hand, I am still (and always will be) so incredibly grateful to have come through it successfully that I rarely think about the lost time. I am getting to the point where I can look at having AA as a positive thing because it showed me who my real friends are, made me much more driven in accomplishing my goals, made me realize how insignificant day-to-day problems are, and made me appreciate pretty much everything. (I didn't realize what a privilege it was to go to the grocery store until I was too immunocompromised to do so!)

As other people have mentioned in previous posts, your age is an advantage because of the treatment-associated trauma that your body experiences. However, recovery is a long, slow road and is extremely frustrating, regardless of age. Hang in there! I am happy to answer any questions that you have.

-Becca