Why do some adoptees care so much about finding out their medical history?

Isabel A

Well, both of my children have asthma. It took forever for doctors to actually diagnose my eldest though because we had no known family history. They kept considering it "croup". He had some very severe attacks, one in which he turned blue. We made several trips to the emergency room for what we thought was croup.
It wasn't. It was asthma.
So my son was finally put on an inhaler at age 2. And life got much easier.

My younger one got the meds he needed earlier because of his brother already having it diagnosed.

Well, it turns out that asthma runs very strongly in my family. My firstmom has it, her brothers have it. It was in my file but was not included in my non-identifying information. I didn't find out until I met my firstmom last year.

They also left out the grandparent who died of lymphoma (also possibly hereditary).

It just stinks that I had to wait over thirty years to learn important medical facts about myself, and because of it, my child suffered.

Mama

I have a blood disorder that is quite rare in Caucasian women. If it weren't for me knowing my grandmother had the same disorder, it would have probably been years before any doctor thought to test me for it. By that time, I would have been a very, very sick lady.

That's why.

PhilM

I have high cholesterol. My doctor wasn't sure whether it was something that could be treated with diet and exercise or whether it was genetic. Why? Because I didn't know about my medical history.

For years, we tried various diet and exercise approaches. They didn't work. He finally gave up and put me on a cholesterol med. But the meds have side effects. If I had known my medical history we would have known how to proceed earlier. As it is, I spent extra years with higher cholesterol because we didn't know my history.

It's not as simple as saying "play it safe." Different medical treatments cost money and have side effects that may be really unpleasant.

My doctor, every time I go in, would say, "I wish we knew your medical history." Every time.

If my doctor thinks it's important, I'm pretty sure it is. That you don't think it's important would only impress me if you have a medical degree.

Doodlestuff

If your family had a history of early death, believe me, you would have ASKED already! No doubt in my mind. Do adoptees deserve nothing less?

My friend and her recently discovered daughter are planning her daughter's funeral (she has stage 3 breast cancer) because the adoption agency refused to forward pertinent medical information 10 years ago. Preventative medicine would have been completely successful. She is 27 and planning her funeral instead of a family. She saw her doctor annually, ate well and exercised. She didn't have the knowledge already hard won by her mother.

It's so easy for someone who has biological family to consider information deliberately kept from adoptees as needless. Adoption agencies do it all the time as do courts.

Robin

At 19, I had a 'class III' PAP, meaning abnormal cell growth. My doctors asked if my mother had taken DES, a drug used to prevent miscarriage. (I was taken from my mom & later adopted at age 3. She had no intention of giving me up during her pregnancy.) I didn't know the answer & neither did my parents. I endured a year of tests, biopsies, & finally a cryosurgery. Knowing the answer may have helped the doctors determine a course of treatment. Or what course NOT to take.

When my son was 8 months old, he had a seizure sever enough to require a ride to the hospital in an ambulance with sirens blaring, medical intervention to stop the seizure & a 2 day stay in the hospital. In the ER, doctors asked if there was a family history of seizure disorders. I had no idea.

If your husband's father & grandfather had both died of heart attacks at 40/42, doctors know to monitor your husband closely from an earlier age than most men need to worry about. There are medical & dietary interventions that can help prevent a heart attack & prolong his life. Or you can wait until he has a massive heart attack & hope her recovers.

As for breast cancer, if a woman has a close female relative who's had breast cancer, her risk of developing breast cancer doubles. Having 2 close relatives increases the risk 5 by times. To some people, having that information is important & useful.

You may not "technically" asked for your family's medical history, but you probably know much of it without having to think about it. You know if a grandparent died of cancer or heart disease, or had alzheimer's. You'd probably already know if there were a family history of some genetic or inherited disease like hemophilia or diabetes or cycle cell anemia or MS. You don't HAVE to ask. And you CAN. Anytime the need arises, you can.

I had anemia for my first 5 years (& very early in each pregnancy). So did my biological mom, a 1/2 sister & my daughter. Now I have a granddaughter. Should I tell her mom? Or just not worry about it & assume she'll figure it out?

It's hard to understand what you "don't have" when you already have it. Yes, we should all eat right, exercise & see our doctors. But, like driving with a map, it's just a little easier when you can see the curves in the road and know what exit to take.

PS Then again, as they say..."Ignorance is bliss!"

Molly

They're looking to eliminate possible genetic diseases or disposition to disease they may pass onto their own children.

Andraya

Hmm look up MCAD. It is a rare and often fatal genetic disorder. I am a carrier, two of my nephew's have it. It is thought that many cases of SIDS can be attributed to MCAD and similar conditions. I had two children without knowing I could pass this on.

Wouldn't you want to know it you could pass on a killer disease to your children?

Erin L

Yikes! Are you really serious? Your breast cancer example for instance. It can definitely make a difference in how you would screen and maybe even treat early breast cancer to know that. Not knowing medical history can lead to lots of extra medical testing that wouldn't otherwise be needed. For instance, my daughter was born with a cleft lip/palate. We know that she has a biological half brother who also was born with this birth defect. We have pictures of him, as well as pictures of her biological parents. This tells our daughter's doctors a lot and avoided lots of genetic testing for syndromes that can be associated with clefts. (The history and pictures told them it wasn't a syndrome, but genetically predisposed in her family.) Knowing this can help her know preventative things to do in any future pregnancy she has. Anyway, just one example of thousands and thousands people could tell you where knowing makes a difference in medical care. Besides the fact that knowing one's medical history can save one's life, I think the biggest thing to most adoptees is that it is not being able to know a part of their own selves and bodies.

By the way, your own children, since your husband doesn't have his medical history, should have certain extra screenings. Do you really like it that they have to do that to be as safe as other kids?

cruzgirlz3

Oh boy....where does one begin. Medicine is not an exact science. To every problem there are many different medical approaches. Family history is the first place MD's begin to know which road to take toward diagnosis. With family history Dr's are much more likely to zero in a problem quickly. Without it they are left to trial and error. Family history is like a roadmap...you can get to your destination without it but it is much more difficult.

You list cancer, and heart disease but there are untold numbers of syndromes, disorders, diseases, disabilities and such that are related to one's genetic background. You simply cannot "play it safe" for all these things. That's just ludicrous.

It is simply not true "if its gonna happen its gonna happen" My husband is a physician and I could site you many examples of lives saved through the direction of family history. Again, you're right, your husband probably will be fine without his history, but I pray that he is not in a situation where his life depends on it.

Minnimouse

It is highly important as people have talked about here already. For me it is a mental health issue. My birth mother has a serious mental illness. From when I was about 10 I started to spiral out of control. I developed depression and eventually social anxiety and I was increasingly having rages, mood swings and crying/ranting spells and even threatening to commit suicide. I found out my mother had mental health issues when I was about 16 by reading my dad's diary. I knew I had to challenge myself to get better because I did not want to end up in a mental hospital like my mother with a mental breakdown or the equivilent. If i had not discovered my history at the time who knows where I would be now. My parents were either in denial or thought I could pull through myself. It took a few psychologists and some medicine to get me out of that rut. If you have mental health issues in your family genes then if you are exposed to stressful situations you are more likely to develope mental health issues than those who don't. Now I know to look out for myself when stressful situations occur and get help as soon as I feel like I am becoming lost again.

Not only this, I now know that diabetes and stroke run in the family and so does arthritis. Fortunately, there does not seem to be a genetic link with cancer.

Still Me

I am just astounded at the question. Why wouldn't anyone want to have as much info as possible so that we can make better decisions, life choices. It is our right.

Heather B

I guess you just rip up and throw away all the family medical history forms the doctors hand to you, because their of no importance, right

Going by your theory, why are those family medical history forms even given to anyone to fill out, huh

Clearly you or your kids have never been in a life threatening situation

Adoptees deserve the same right to practice preventative healthcare with full knowledge of their genetic medical history as any other person and you are in no position to judge what people can or cannot know about themselves or their genetic history

in COGNITO *

In some cases some one may have an inherated problem.

My daughter at 1ry showed got VERY sick and becuse I had kidney reflux as a child she had a 2/3 change of having it to. Had we not have know that I had it, they probably would have treated her as if she had the flu. She needed tp be on anti-biotics for a year and have a low sodium, diet.She also had a duplicate kidney Because of her kindey problems they ordered a kindey scan for me and it showed that I had nepheritis (sp)...and a duplicate kidney.

Because of my medical history, she was treated promptly with minimal irreversal damage. There was a direct link for our care based off of each others diagnosis.

Laurel J

I'm tired of erring on the side of caution. I get twice as many mammograms as other women my age because my family's breast cancer history is not known. I get extra blood tests. I'm not insured, so I get to pay for these things--all because I can't have the information others take for granted.

It would have helped me a great deal to know disc compression disease and osteoarthritis run in my family--I could have done exercises to improve my posture and minimize and/or prevent these conditions. Instead, I have ruptured discs. And had I known high cholesterol runs in my family, I could have started getting checked for it earlier. Had I not gotten checked routinely at age 40, I could have already had a heart attack, but I haven't, because I got the needed info and took the necessary steps. It's always better to know tha you are a ticking time bomb, as it were, because you and/or a doctor may well be able to do something to defuse your.

In addition to costing me money, not knowing my history makes me feel I'm being punished for something I didn't do. I have a right to this information It is about me.

jennislandgirl2001

I am not sure if you have children or not, but most adoptees with children want to know their family medical history for them. Maybe ppl want to know because that is the first thing a Dr asks if you are sick or at the ER. Yes, anything can happen, but if you can make better choices to avoid potential health problems such as heart attacks, why not? Yes, it would help you knowing, there are foods you can eat and things you can do to reduce the risk of a heart attack (your example). You never know what will happen but it is better to be informed. It sounds like you have a personal issue with medical history and not so much an adoptive issue with it. If your husband doesn't know who his bio family is than this question is kind of pointless.

Torrejon

I guess I would not care so much about my medical history if my doctors would stop asking me about it, telling me that I should try to get some, any information...even cause of death for each bfamily member would be helpful they say.

If, as you claim, what is going to happen is going to happen...why should any of us go to the doctor at all?

Try it someday...go to a NEW doctor and tell him you know nothing about your medical history except that your bparents were healthy enough to conceive you and bmom was able to carry you to term. And answer every question with: I don't know. See how the doctor responds!

jodee1kenobi

What is there to get? If you have a rare disorder or cancer or need a transplant or have a genetic dirsorder, then it is higlhy valuable to know your families medical history!!! They might be able to give bone marrow or blood or a body organ!!!!
As for the saying that most women diagnosed with breast cancer dont have a history in the family, I beg to differ on that.

If they know that there is history of anything in the family then they can go to the doctor who may give them a chekc up every so often in order to catch things early.

Not being an adopted person it is easy for you to ask this quesiton on NOT get it? Would you be asking the same question if you WERE adopted??!!
No I'm not adopted, but I GET IT.

dory

It's not just about us and our medical history - it's our children's and grandchildren's. I would hope that any parent would want to know everything they could about their medical history in order to make the most informed decisions for their kids who have undiagnosed ailments and need treatment.

My doctor asked about my medical history when I was having repeated miscarriages and I had to say "I don't know, I'm adopted" - to which he responded "that's a shame you don't know, without it it's like looking for a needle in a haystack."

whatever!

Um, have you heard of genetic disorders? They are passed on from father to child or from mother to child. I will list a couple i know about. Sickle cell disease, RH factor, Tourettes, this is just a few off the top of my head. Knowing if you are a carrier of these genetic disorders could influence a person's decision on wither or not to have kids. That is why it's important. By the way when the doctor ask's for medical history, do you say why should you care? So, yes knowing medical history when it comes to genetic disorders that can be passed on from parent to child is very important.

BPD Wife

I am not adopted, my son was. However, as a human being, I would want to have as much medical history as I possibly could so that if something comes up that the doctors are not sure about, it will at least point them in the right direction.

There will always be illnesses or disorders that have nothing to do with genetics, but there are tons of things that do fall under that category.

My mother has recently been diagnosed with colon cancer. She had no idea that she had it and waited until it was too late before she sought medical treatment. I, on the other hand, knowing it is genetic will now go for tests and at the first sign of any pain, will ask a doctor to confirm that I do not have colon cancer. It could save my life.

My son has a genetic disorder that is life-threatening. His bio parents did not know they were carriers so that medical information may not have saved his life. However, the medical info that he now has could save his siblings life or that of his children. Yes, I do believe that medical records are extremely important to everyone - adopted or not.

bestadvicechick

I agree with Phil - great answer. For me, my husband and I recently went to our doctor because we are getting ready to "try" to have a child. We thought we'd play it safe & get an advice the dr had upfront in terms of diet, exercise, vitamins, etc. I hadn't even thought about my status as an adoptee when I walked in the dr's office but it was clear how important it was by the time I left. He said because we didn't know my medical history, they needed to perform various tests to make sure any baby we conceived wouldn't have certain things. Knowing my medical history would have given them an "edge" in knowing what to look for or what could complicate my pregnancy. Since they don't know, all he can do is do the typical things he would do for a person with Asian decent.

I think what most adoptees hate is the fact that they just don't know. It's easy to say 'well what would you do differently if you did now' but you at least HAVE THE ABILITY to know.....in many cases, we don't even have that choice. While I agree you can't live your life in fear wondering if you'll get diagnosed with something, it's also nice to know ahead of time so you can move forward in an educated way.

As any medical professional will tell you, information is power. The more information they have, the better able they are to treat any illness you have or get ahead of a threat of an illness. KNOWLEDGE is power....and when the information you have is much less, then you can't make as informed decisions and neither can your doctors.

Juniper K

It's to make sure you don't have any harmful genetic diseases that you could get or pass onto your children. And breast cancer is hereditary.

snowwillow20

Everyone should know their medical history (so yes ask your parents, if you have a history of heart attacks at an early age, you would know not to smoke, to eat better ect, If you have a history of diabetes, that doesn't mean you have to get it, you can do what you can to not become disbetic but the main reason for having that information is in case your family has any life threatening illness's that you might not want to pass to any children.

coleluvsdane

your right about some things..but other disease which may be hard to detect but if you know you have a family history for it. you can tell your doctor about it. otherwise you might not find out. but sometimes you cant know but it doesnt mean your screwed. right!! if you do have parents that you can talk to it is a good idea to find out about your history. most of the time its normal cancer and heart disease are pretty much the norm. odds are we are gonna die of heart disease or cancer anyways..great huh.

littleJaina

What it really comes down to is this... if you get a serious medical condition that doctors cannot easily diagnose, a detailed accurate family medical history can help them know where to look - it can give them ideas of what more intrusive tests to run first or what combination of ailments may be producing this particular ailment. The other time it is important is if there is a serious genetic ailment in your family. If you are a carrier for Cystic Fibrosis or some other severe dissorder, then if you marry someone who is also a carrier, the chances of having children with serious, painful, debilitating and life threatening conditions can be quite high. In those cases, most couples will seriously rethink their decision to have children naturally - or some will make the decision to do genetic tests on cells obtained from amniotic fluid early in pregnancy so they can terminate any pregnancy with the trait.

Thus, medical histories aren't entirely unimportant. It would be good if all biological parents provided as much medical histories on their families as they can, just in case the adoptee needs them.

However, you are right that your medical history almost never does you any good. Unless there is something truly unusual in it, most of the risks you encounter are ones they normally screen you for anyway. Sometimes medical histories can even be misleading. For instance, my son has had major problems with congestion (sinusses and coughs) since he was only a few weeks old. For 3 and a half years they had him on almost every allergy medicine in the books, trying different combinations of them - assuming he had severe allergies, since they run in both my family and his fathers. Finally, this summer, they decided to run a blood pannel to see if they could nail down exactly what his triggers were. Guess what! My son is not actually allergic to ANYTHING!!! The doctor couldn't believe it, and so re-ran the tests two more times. He doesn't have any allergic reaction at all to any of the hundreds of things they checked! So now, after having him drugged with useless medicines for years we still don't know what's wrong. It's a little frustrating. I know that in general, medical records are a good thing (particularly for kids who do have genetic conditions that effect their health) - but in my son's case, the doctors may have decided to look for other causes years ago if they histories hadn't led them into such a false sense of security that they knew what was going on.

Dreamweaver ILF posse 2009

I know how it works and why doctors want it. But i was adopted in 1969. Back then, they didn't know about breast cancer screening or any of that so even if I get my medical records, they aren't going to have much information that is useful to me right now....or would have been useful while I was pregnant - except maybe in the instance like the lady with the kids with asthma.

Clueless

you are right =)

Nyla S

They don't really care that much, it's just something else to whine and ***** about.

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