She's Adopted

They just didn't tell her

Health and Heredity

on November 14, 2013

I grew up with many health problems. I remember spending hours and hours of my childhood sitting in hospitals and doctor’s office  getting x-rays, casts on and off my feet, sometimes on my arms, fingers, wrists… you name it.

Even without broken bones, I was constantly in pain. Migraines, back and feet  hurting me almost everyday… Plus I was growing too fast. My heart beat was always working too fast. I was constantly falling and my vision was failing quickly.

No one really knew what was wrong with me until, at age 9, an endocrinologist finally came to the conclusion that I had Marfan Syndrome.
From that point on, my days being a lab rat for cardiologists, orthopedists, ophthalmologists and everything else was just starting it. It was a living hell for me. I was only a child. I had no clue of why I had to be going to so many doctors while my quality of life was degrading severally due to lack of explanation given to me about Marfan and how to live with it. I was not allowed to say or ask much because my adoptive mother wasn’t a very patient and loving mom. Her habit of constant hitting me on my back, head and legs was not very helpful to my already achy skinny body.

But I grew up and went through high school and College forcing myself into sports I loved: Volleyball, Handball, Soccer… and with that came more broken bones and pain.

My adoptive family kept lots of pertinent information from me. They had the opportunity to explain what they knew about this heritable disorder of the connective tissue that affects many organ systems, including the skeleton, lungs, eyes, heart and blood vessels. They could have save me a lot of trouble but they chose not to.

Obviously there was no history of Marfan in the family, so they opt to keep me in the dark, living like nothing was really wrong with me.

I guess they were under the fear that I could, put two and two together about being adopted and start digging about my origins and eventually discover that I was illegally adopted.

Having a child under their roof with serious heart problems, chronic pain, anemia, and predisposition to glaucoma wasn’t enough justification for them to tell me that I was adopted and needed to understand the effects of it to me and a future child, if I ever lived to have one.

It took 40 years and several life threatening surgeries for me to understand the importance of knowing my health history.  I know now what Marfan really is and how it can affect my blood kin.

My adoptive family still refuses to give me any information about where I came from or a lead to someone who could help me to discover what else is hidden in my roots. And the question that often takes over my sleep remains: “What else should I and my 9 year old daughter watch out for it?”

Well, I guess that door is closed to both of us.

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Over 4,000 diseases are caused by single defective genes. Missing and sketchy health histories put adopted persons at risk, particularly as they age and need to know the risk factors for common killers such as cancer and heart diseases.

Adrenoleukodystrophy
Albinism (ocular form)
Alzheimer’s Disease
Charcot-Marie-Tooth Disease
Congenital Adrenal Hyperplasia
Familial Amyloid Neuropathy
Familial Polyposis of the Colon
Growth Hormone Deficiency
Hemophilia A
Incontinentia Pigmenti
Manic Depression (bipolar type)
Muscular Dystrophy (Duchenne type)
Neurofibromatosis
Osteogenesis Imperfecta
Polycystic Kidney Disease (adult type)
Retinoblastoma
Spinal Muscular Atrophy Thalassemias
Von Willebrand Disease
Wiskott-Aldrich Syndrome
Agammaglobulinemia
Alpha-1 Antitrypsin Deficiency
Aniridia
Chronic Granulomatous Disease
Cystic Fibrosis
Familial Hypercholesterolemia
Fragile-X Syndrome
Hemochromatosis
Huntington’s Disease
Lymphoproliferative Syndrome
Muscular Dystrophy (Becker type)
Muscular Dystrophy (myotonic type)
Ornithine Transcarbamylase Deficiency
Phenylketonuria
Retinitis Pigmentosa
Sickle-cell Anemia
Tuberous Sclerosis
Wilms’ Tumor


“Morally, there is no family, and no person planning to have a child who can ignore the new genetic discoveries and techniques for preventing genetic disease. Your health and welfare and that of your (future) children are at stake. We all have a right and, indeed, an obligation to know about our particular genes and to consider the options available that increase our chances of having healthy children. We should also all have the freedom to exercise these options as we wish and as rationally as we are able.”

“Knowing your family’s health history can save your life,” said Dr. Eric E. Whitaker, Director of the Illinois Department of Public Health. “By having the information readily available, doctors can more closely monitor a person’s health for common diseases, such as heart disease, cancer and diabetes, or even rare disorders like sickle cell anemia or hemophilia, that can run in families.”
– Aubrey Milunsky, M.D.   

 

The picture above is from the film Roots: Unknown by Zara Phillips. And speaking of Zara, here is the trailer for her movie:

 

 

 

 

 


7 responses to “Health and Heredity

  1. TAO says:

    People just can’t seem to understand that what they take for granted – knowledge or the ability to ask someone in their family – is really priceless. Both Shadow (blogging partner) and I also have rare diseases, mine is similar to yours but they have yet to find the gene or genes.

    Have you tried to get your adoption records unsealed based on good cause? Your disease had serious implications and how it presents in your family may be very valuable to your doctors. If interested you have to petition the court you were adopted in and generally they just have a form for you to fill out.

    • Lu Gualberto says:

      Hi Tao, there is no adoption records 😦 There is a 99.9% chance that this was an illegal deal.
      I’ve consulted with a few lawyers in Brazil and after a record search they told me there is no information on record.
      My father has passed a few years ago and my 77 years old mother swears that she doesn’t know how my dad got a hold of me.
      At this point, all I can do is try to prosecute her and send her to jail. Is that even worth it, at this point? will I get the answers I need? highly doubt it 😦

      • TAO says:

        Oh, I’m so sorry to hear that. I can’t imagine how that would feel and agree what would be the point. I’m so sorry! I wish there was something I could offer.

      • Lu Gualberto says:

        I know Tao, thank you for the kind words. My situation is a “cluster mess”.
        By the way, your blog is beautiful1 Good job!

  2. Katja Sheikh says:

    Hi Lu. I am sorry to hear about your pain. I want you to take under consideration the fact that you could be a spontaneous mutation and its possible that your birth parents didnt have Marfan. Although I my self doubt very much that thats even possible since my father had no symptoms and tested positive for Marfan at age 64 just before his death.
    I was diagnosed at age 5 and my life just like yours was living hell. Hospitals and doctors were the worse. I blame that for not being able to develop a proper relationship with my parents who just dodnt know what to do with me anymore.
    I had a mother who was never there for me and a father who was constantly putting me down for being so weak.
    I do understand your pain and need to know where you come from. Without DNA testing I would never be able to have a health child. But looking back sometimes doesnt bring relief but more pain. Many will say that family is these days over rated 🙂
    I do understand the point you are trying to make about adoptive children being able to know their birth parents so they can know potential diseases that they might face in the future but its important that you look forward into the future and not live in the past.
    Remeber everything happens for a reason.
    I wish you the best of luck
    K

    • Lu Gualberto says:

      Awe katja! Thank you very much for your wise and kind words. I Needed to “hear” that. Sometimes (well, a lot of times) I lose track of my goal. I keep falling between the challenges with my health and the sense of abandonment from birth and adopted family. That can still take me off the track easily. But I’m learning to move forward, I keep pushing myself and I know that eventually I will get there. Thank you ♡

  3. Discovering Mary says:

    Excellent yet disturbing post, Lu. It is infuriating and baffling to hear of the blatant cruelty that the adoption system (and your adoptive parents) breeds. Your story touches on the possibility of black market adoption and reminds me of a book I recently read that deals with illegal adoption: “Fraud on the Court: One Adoptee’s Fight to Reclaim His Identity” by Mike Chalek, Jessica Gardner.

    Thank you for sharing your story, Lu. This is where the adoption revolution begins.

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