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    March 4, 2011

    General readers! Has Henrietta Lacks’s story captivated you? Have you benefited from her cells? Share your story.

    146 Comments →

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    If you have read The Immortal Life Of Henrietta Lacks, we want to hear from you!

    Since the book was published, readers of all kinds — scientists, teachers, nurses, librarians, members of book groups, high school and college kids, people old and young from all over the world — have emailed, written to and faxed author Rebecca Skloot sharing their thoughts about HeLa, and The Immortal Life of Henrietta Lacks. We want to hear from you too!

    So many readers have been personally touched by the story of Henrietta Lacks: Did it change the way you think about cells, science, medical practices, research, race, American history, the way cancer is treated? What is your relationship to HeLa? Did HeLa cells help save your life or the life of someone you love? Did the book change how you think about your own research? Were you touched by the story of Henrietta’s family? If the book moved you, we want to hear about it. This is the place to tell us your story.

    Email us at renee@rebeccaskloot.com with your story, thoughts, and comments, or post them in the comments thread below.  And stay tuned:  We are also collecting video testimonials, which we’ll be posting online soon.  If you’d like to submit a video testimonial, please drop us a note at the address above.

    146 Responses to “General readers! Has Henrietta Lacks’s story captivated you? Have you benefited from her cells? Share your story.”

    1. Nicola says:

      Rebecca, I have not read all of the nearly 150 comments, but from the ones that I have read the authors all agree that you have done a fantastic job with this book. I, too, found it everything that it has been reputed to be, and can’t possibly praise it highly enough in all it’s themes: family loss, medical ethics, cultural conflicts and so on.
      And I, too, have been personally affected by Henrietta’s life and legacy, unbeknownst until reading the book, because I have recently undergone chemotherapy for lymphoma using precisely the chemo agents developed from HeLa cells.
      So I, too, am extremely grateful, and saddened that while so many millions of us have benefitted, the Lacks family have suffered so much. I’m not sure that things have changed that much re medical ethics etc? Certainly the medical establishment is quite careful re patient confidentiality, informed consent, and certainly in terms of access to records, but after all, we do donate blood, organs, so perhaps it is taken for granted that we might not object to our bits and pieces no longer necessary to us and removed during various operations being used to enhance the “greater good” whatever that might be construed to be. It’s just so sad that it’s not always the right people who reap the benefits.
      Anyway Rebecca you have done a wondrous thing in raising all these questions, in exposing the injustices, and in supporting the Lacks’ in their quest for the knowledge and the truth. I hope sincerely that the family now have been able to find some peace, and that the gratitude of so many of us in some small way is some small recompense.
      Thank you again for this tremendous contribution. Nicola Friesen

    2. Anthony Mawusi says:

      It has been years since last I read a book.
      The first time I heard about the immortal life of Henrietta Lacks was about 2 months ago,on CBC radio Edmonton ,when the author,Rebecca Skloot was being interviewed.
      The story stuck,with me and yet had not made any effort to get the book.
      Fortunate for me,there was an excerpt of that interview being played on the same station just 3 weeks ago and finally,last week I told my,that if she ever wants to buy for me a book,it should be the immortal life of Henrietta Lacks,by Rebecca Skloot.
      Wow!what a wonderful read.
      The story was well told and the characters were so real,to me that I felt as though I was there with them.
      I thank you for bringing these people,through this book and introducing us everyday “joes” to the wonderful world of science and medicine;which was made possible by the suffering of a family,through one woman and the genius of man through science.
      Because of research that was done on HeLa cells,my kidney is in my brother and we have anti rejection drugs to help him live a life more fulfilling than he would have going for treatments every week.
      To the Lacks family; I thank you for your willingness to let hatred go and let science carry on,helping people through the cell of your beloved mother.May God continue to bless you and give you peace in your time of need.

    3. Sue says:

      Without all of the science those cells would have died with Ms Henrietta. How would they have known that some would eventually make a business out of harvesting and selling. I keep asking myself though would anyone during the initial process have really stopped to ask if the patient or family knew about this miracle. I think probably not. For some reason I don’t have an issue with tissue research…especially when something really good comes from it and as long as the source remains confidential.
      My heart breaks that Ms Henrietta had to suffer this illness and death. My heart breaks for her children that they had to grow up without her protection, love and support. The abuse and hardships and pain that they suffered is a story in itself – unforgivable. I hope this book has brought them some peace.
      My heart warms for Deborah and Rebecca for their determination and perseverance to find answers and tell the story. Also to Christoph Lengauer’s generous contribution to help Deborah and Zakariyya understand as well as the help from Paul Lurz from the Crownsville hospital. Both seem to mean so much to the family. Rebecca’s generosity and compassion are still present on this website. Very impressive human spirit.
      In the end this story left me with the impression of a family, that even through tragedy after tragedy, they loved and cared for each other. I’m glad this book and foundation is helping them reach higher levels and hopefully an easier, happier life. To quote the cousin Gary “Even if you lose everyone….God never turns His back on you”.
      Thanks for sharing this life story.

    4. Klaus says:

      I’m living in Germany and only a couple of weeks ago, I read one of the latest issues of the swiss culture magazine ‘DU’. There was an interview with Trevor Paglen where he answered questions about his project ‘The Last Pictures’. Trevor Paglen has chosen 100 pictures which give a sight into our contemporary life and culture. The article showed some of the selected pictures, each of them with a short description. That’s how I met Henrietta Lacks for the first time – one of the pictures showed HeLa Cells and the description told in a few words the background story. I tried to find out more about HeLa and so I found the book from Rebecca Skloot which I’ve read now – I’m deeply impressed… thank you Rebecca for this invaluable work.
      These 100 pictures have been written to a special long-term archival disc encased in a gold plated shell. This device has been designed to last for ages and has been send with the communications satellite Echostar XVI into geosynchronous orbit, where it will stay for billions of years – with the picture of HeLa cells. In a certain way, Henrietta is now even more ‘immortal’ : the picture of her cells will circle around the earth even after mankind has disappeared.

    5. linda says:

      The book is a real page turner. Rebecca has the ability to turn dry scientific data into an interesting and easy to read format. I am sure that may readers, like myself will find it had a place in their life. I recommend it to everyone especially those on the fringe of the medical community as well as those who are destine to be future patients.
      After being told that I have breast cancer, the surgeon implied that I had a chose between a lumpectomy and a Mastectomy, but the truth is when I am unconscious on the O.R. table the surgeons going to do what they want to do. After reading Rebecca Skloot’s book “The Immortal Life of Henrietta Lacks”, I find myself asking these questions:

      How many Mastectomies are done to save the patient?
      How many Mastectomies are done to harvest the nipple for bio tech companies?

      Past generations recognized this and made selling body parts illegal and kept the “selling” at a minimum, and behind closed doors. Rebecca book bring it the forefront.

    6. jean says:

      This book is simply fascinating. Thank you so much for telling us Henrietta’s story and giving us a chance to pay honor to her. I remember when my mom was laying in the hospital bed in the final weeks of her life, I couldn’t figure out why no one was trying anything to help her, or documenting what was working or not working, or what affects certain meds were having on her. I was so naive about the medical profession. Treatment was based solely on prior clinical trials. Henrietta’s immortal cells proves to me that every human body is unique and precious and deserve treatment as such.

      My mom was a wonderfully kind religious woman and relied solely on the medical community to save her life and truly at the end, no one cared much.

      To the Lacks family, we care and thank your mom for all those she has helped.

    7. Jill says:

      When I started to read this book, I read the first half in an evening. It took a few more days to get back to the book and finish it. When I was done I felt anger towards to medical community for doing what they did. I know that times were different and people were treated different, but there was still that anger that someone would take a person’s cells, create something so great, and NOT tell the family. In today’s world that wouldn’t happen.

      This was a great story to read. I have recommended it to many people. Thank you for sharing the story and opening up many eyes to some of the unethical ways things were done. When I see the book I think back to Heneritta and wonder what her life was like. She seemed to be a strong person, not letting cancer get her down or stop her until the very end. What a wonderful story to tell.

    8. Vicki says:

      The Immortal Life of Henrietta Lacks was fascinating! I learned a lot more about cell research and was grateful to learn the life story of the woman whose cells started it all. My daughter has a genetic disease, Cystic Fibrosis. A medicine has been marketed that corrects the defect in the gene that causes CF. Unfortunately, that particular defect affects only a small percentage of the CF population. However, from that research, a clinical trial has begun with a medication that will correct the defect that affects a much larger percentage of the CF population. That is the defect that affects my daughter. I am extremely hopeful that a cure will be found soon for CF and for many other genetic diseases. Genetic research has come so far and now I can remember and give credit to the woman whose cells started it all!

    9. SG says:

      I really enjoyed the part of the story when Debra got to meet the scientists. I donated my sons eyes, liver cells and cord blood to research in 2010 and went on a quest to meet the researchers who recieved them this year. I got to meet them all. Here’s a presentation I did at the Washington Regional Transplant Community a few weeks ago:

      http://www.youtube.com/watch?v=MO26e5nlZIs

    10. Michael Rozelle says:

      What an incredible, informing and moving book! My heart is still racing from all of it’s ups and downs. This story/book should be required reading for all High School students. It reminds us that no matter how insignificant your life may seem, we all are put here for a purpose. We may not know what that purpose is, Henrietta didn’t know, yet look how her trials and tribulations changed the world! What an important lesson to learn. And thanks to Rebecca for her persistence and Deborah Lacks for her love for her Mother and Sister, that caused this story to be told! God bless them both and the entire Lacks Family and everyone who helped in putting this book together!

    11. Mona says:

      This is the greatest book I have ever read. Its very well written, simple to understand and well put together. I read it a couple days ago and I am reading it again. I am happy that Henrietta’s cells helped saved the lives of so many people but it exposes the immorality that goes in in the medical field and the injustice that is done to Henrietta’s family. The least that could be done to honour Henrietta’s contribution to medicine would be to give the family access to free medical care. I am concerned that the law gives so much latitude to doctors to use human “waste” for medical research without permission. Who determines what is waste. When one is opened up for surgery the doctor can say let me take a piece of this or that from a normal functioning organ for medical research and classify it as waste even though it may not be related to the purpose of the surgery.
      Thanks Rebecca for a job well done!

    12. Hope says:

      My grandmother was Rebecca pleasants and she was born 11/1919 Goochland County VA and passed away 05/2002. Her father was John Pleasants and her mother was Betty Louis Pleasants. She did not tell me much about her family and she said most of the birthdays and names were made up. She was born 11/1919 but not sure which day. She moved to Newark NJ and never looked back. I do know that her sister I called “Aunt Alice” also moved to Jersey City, NJ with her daughter Doris who died of cancer in the 80′s. There is a funny story that she told about how she left VA and we had written a speech on her 75th birthday.

      I had to interview her about her life for a 6th grade project. I asked her certain questions, I still have it. I wonder if there were a relation…she sure sounded like she could have been the sister Lillian. Our family is mostly very light skin with blue and hazel eyes blond hair I wonder if she married John Larkins because he looked white. I always wondered about my family history but I could never find anything past her mother. We do have a photo of her mother with the other half cut off. She really must not have liked the man next to her because she would not say who it was. Her niece Betty gave me the book a cople month ago and I didn’t read it for a while and I didn’t even know where I put it. I was looking for new books to read after graduation and it was sitting in my side table and I read the first two chapters and I said this sounds too similar to my grandma’s up bringing. I don’t know if they were related but it would be nice to know about my ancestors. We had a Pleasants reunion this summer in south jersey and a lot of family came from NY, Baltimore and VA. Elsie was there I do know that I think she was named after a family member. I hope they read the book because they are older and do remember a lot athough they don’t like to talk to much about the family history, I still want to know about the family though.

    13. Deborah says:

      I simply couldn’t put it down, and frankly, that’s a rarity for non-fiction for me–especially one focused on science. Beautifully told, this story rights some of the wrongs that have been done to the Lacks family. Thank you for persevering!

    14. Sophie Villeneuve says:

      I live in France and English books are hard to get hold of. But I found this wonderful book in the library .( Although the biggest central library here maybe own a couple hundreds of English books at the most.) I am sure there are French translation of this book but I dilike reading books other than their original language.I was first attracted by the brief introduction of the story on the back. Then I was intrigued. Within a few days I finished reading the book. I feel very sorry for the Lacks family for all the sufferings and injustice that’d done to them. This book broke my heart and I shed quite a few tears in the process of reading it. After finished reading the book , I wanted to know more about this family and that’s why I end up here. Anyway, I am glad that Miss Skloot spend a lot of time and effort to write this book, to let the world know about this legend. Furthermore, the set up of the Henrietta Lacks foundation is such a beautiful and decent thing that I absolutely will donate something to help the Lacks family or those who are in need. Merci , mademoiselle Skloot et merci , la famille de Lacks.

    15. Ryan F says:

      Ms. Skloot,

      As you well know everyone reads books for different reasons. Some purely for entertainment, others to be informed. Usually I read books to be entertained and become informed. When I saw your book at a Barnes and Noble and decided to purchase it I knew this book would definitely be informative, but it was a gamble as to whether or not it would hold my attention. Today I just finished it and I just have to say you did a fantastic job on combining a captivating and entertaining storyline that was balanced with well researched statistics, anecdotes, and historical excerpts. I also enjoyed your attention to detail with the timeline header at the beginning of each chapter. It made the story easy to follow by having that chronological context.

      I’m sure you’ve heard this thousands of times over but Henrietta’s story, and its effects are of utmost importance. Had you never written this book I never would have known who this woman was, her contributions to medicine, or the implications of her cells on the future of medical research. Thank you for helping me to become more informed and your years of work in producing this book.

      Sincerely,

      Ryan F

    16. Richard Schultz says:

      At every turn of a page I was amazed. Creating such a multi-faceted story with consumate care and artistry is the work of a masterful writer. Your dedication to this task was awe inspiring.

    17. judy c says:

      I just finished reading The Immortal Life. My sister and I were both in Johns Hopkins hospital around 1963. She was 7 and I was5at that time. My sister had open heart surgery. I am not sure why i was a patient, but had two surgeries, what ever they were for we don’t know. She and I have scars on the same parts of our bodies. Our parents are no longer living,but as an adult when I asked my mother about what they did ,she said Im not sure . Maybe some sort of growth study. My parents were not well educated . We were very poor. Not knowing why, or how long I was in the hospital has caused alot of pain for me. My sister and I remember all, the smells and the playroom and the layout of the floor we were on. I know this sounds obsessive but, I feel taken advantage of as a child. Do you have any Idea how long they keep medical records? Ii’m sorry to ramble, but have carried these memories around for 51 yrs. Thank you for telling Henrietta’s story. At least her family now knows the truth.

      • Rebecca says:

        Thanks for the kind words, Judy, I’m glad you enjoyed the book. To answer your question, if you were a patient at Hopkins, they will still have your medical records, and you should be able to just request a copy of them. If the surgery was done there, your records should answer your questions about what the surgery was for. If they’re not clear to you, you may want to share them with your primary care physician and ask that he/she explain to you what surgery was done. Your sister will have to request her own medical records, as they’re private and can only be shared with the patient, or someone who has power of attorney over the patient.
        Here’s a link to Hopkins’ instructions for requesting records: http://www.hopkinsmedicine.org/the_johns_hopkins_hospital/medical_records_privacy/request_medical_records.html Best of luck, and I hope this brings you some positive closure.

    18. Beth says:

      I thoroughly enjoyed this book. It amazes me that had Rebecca not chosen to tell this story when she did, the history and the Lacks’ family story would have been lost forever as the older generations passed on. I am sorry that so much of their history was already lost due to deception and the nature of the time period itself. I hope the Lacks family can continue to grow as they are already, and continue to be proud of Henrietta’s contribution to science.

    19. Robert Borok says:

      Ballad of Henrietta Lacks (to the tune of The Ballad of Jed Clampett)

      Tellin’ you the story of Henrietta Lacks,
      Early dead of cancer, she was poor and proud and black,
      Hopkins took a slice from a tumor biopsy,
      And that was the birth of a bio legacy.

      (the HELA, humanity‘s first immortal cell.)

      Steeped in Guy’s brew, one cell was two then four then eight,
      Sixteen, thirty two; sixty four, one twenty eight;
      Those lethal cells kept a growing exponentially,
      Soon replacing Mrs. Lacks, existentially.

      (Born to divide . . . Born to divide…)

      That tissue was harvested sans client consent,
      From lab to lab, across the world her micro-daughters went.
      “Passed on” Henrietta; on and on passed her cells.
      Lab occupation their movement, and they’ve done it well.

      ( Amazing, that cell line, mighty HELA)

      The family was unaware of her immortality,
      Countless scientists gaining fame with amorality.
      Medicine and man owe so much to the HELA cell,
      Salk vaccine, gene mapping, and AIDS research as well.

      (the HELA, a cell line, amazing!)

      To her family, HELA was no blessing, it was curse.
      The world may have it better, but the Lackses have it worse.
      Those cells are living gilded lives, for perpetuity they’re set, .
      The Lackses earn meager livings, on toil, and luck and sweat.

      (Unjust, but legal, Supreme Court certified.)

      To the family, the industry has never offered aid,
      Though Medicaid and charity may get a few bills paid.
      But Rebecca Skloot has opened a scholarship account,
      Donations are quite welcome, in large and small amounts..

      http://henriettalacksfoundation.org/ The Henrietta Lacks Foundation/PO Box 6598
      Kennewick, WA/ 99336-9998 USA

    20. Ashley M. says:

      This was an awesome read. The story was well written and very informative. I have not heard of Henrietta Lacks or HeLa until I read this book. I loved the facts and reading about Rebecca’s journey in finding the family, hearing their stories, and all the information she learned as well. I will never forget this story and the information I learned about Henrietta and her cells. Just as you were stuck on this topic after hearing about Henrietta’s cells, I think I’m stuck as well.

      I would recommend this book to any and everyone I know.

    21. i found this book amazing . i found the story disturbing on many levels. i think that it is eye opening. how poor people black and white have been treated poorly by the medical community. it was disturbing to read about medical tests that were performed on people without their knowledge or consent.

      this book is very well written. it is wonderful that we were able to learn about the lacks family and henrietta specifically as living breathing human beings.

      thank you rebecca for writing this book.

    22. Sarah Richards says:

      I had attended one of the many informative presentations of Rebecca Skloots’ today and I had felt a deep connection with how she told her story. I was just a row back from the Lacks family themselves and I had seen as Rebecca told the story, how they responded with gestures and head nods, even sometimes making comments ever so gently to themselves and it made me think. I’m sure they’ve sat through many different lectures, hearing the same story over and over but what we overlook is that it could be the 100th time they’ve heard this but how deeply affected they are by this story is what we do not understand. The one person who saw that was Rebecca. She began to investigate and through it all became their voice. Rebecca shared a story with us all about how Deborah was always scared of Rebecca taking advantage of them but always jumped back and reminded Rebecca, “Don’t ever let me scare you away from writing this book.” and Rebecca did just that. Rebecca is an amazing story teller and I am more than impressed with what I learned today.

      • Rebecca says:

        Thanks so much for those kind words, Sarah. I’m thrilled you were able to be there with the Lacks family — I hope you got them to sign your book! Best wishes — Rebecca

    23. Sue says:

      I started working with HeLa cells in 1983. You never forget that cells in culture are alive and need TLC to survive. A true bond forms to make that happen, including the care and feeding on nights, weekends and holidays as need be. I can still hear Dave saying, “I’ve got to go feed my cells”. A phrase often repeated in our science oriented house for very many years.

    24. LaTonya Smith says:

      I am a college student and we have to review Henrietta Lacks and how this is relevant now and with other gene patients. First, I had to be put on a waiting list for the book at the local library, because all the surrounding counties did not have it. I was very excited when I received and read the cover. But. As I read the jacket I began to feel a deep sadness come over me – especially for the family that is still poor today. As I read the first couple of chapters I had tears coming down my eyes. As a black female around her age at the time, I felt her pain, the families pain, their struggle, the deception and injustice. I think Rebecca was very sensitive and caring – it should through her work. The book is so well written that you envision every movement, every sound, every emotion, every person. I am still struggling to read it, but it is by far one of the best books I will read. I hope that this book get more national attention. It is very informative and beautifully written.

    25. scatterbrain says:

      I loved this book and would like to think that Henrietta knows the contribution that she has made to the health of the world—-I am also EXTREMELY grateful that I live in the UK where everyone has access to healthcare regardless of personal circumstances (and sincerely hope that the present government don’t succeed in their current plans to destroy this without mandate as they are currently attempting to do.)

      I do however, have a couple of questions.
      A lot of the issues in your book are understandably about race and I fully understand issues at the time re. the Tuskergee study (apologies if I have spelled this incorrectly) and find it completely indefensible, but is it not the case that a lot of poor, uneducated white people would also have been treated the same way at the time and it is more an issue of education and status/wealth than colour in itself?
      Have you considered writing a book comparing the differing standards (if any) for medical treatment between different racial groups and social status and also between able-bodied and disabled members of different racial groups—-I for one would find such a book fascinating to read, especially being disabled myself.

      The other question I have relates to the nature of the HeLa cells themselves—you state that the cells had an enzyme called temelorase which turned off the tumour surpressing gene and also prevented the cells dying by keeping the cell “tail” (if I understand you correctly). I have read elsewhere that this is in the nature of all cancer cells, whether HeLa or otherwise, so what is it specifically about the HeLa cancer cells that make them so much more virulent than all other cancer cell lines and have any other cancer cell lines been treated with the HPV-18 in an attempt to make them grow like HeLa cells? if so, what was the result?

      I had always thought that all cervical cancer was caused by HPV so I would have thought that other cervical cancers over the years would have been caused by HPV-18 so other cell lines would have HPV-18 in them. Should these cell lines not behave in the same way as HeLa cells?

      Hope you can help answer my questions—-I too have had many family members die from cancer (including my mother), several in the past few years, so your book had special meaning for me. Thank you for writing it.

      • Renee says:

        According to Rebecca’s FAQ at http://rebeccaskloot.com/faq/:

        This is the story of how cells taken from a black woman without her knowledge became one of the most important advances in medicine and launched a multibillion-dollar industry, with drastic consequences for her family. It’s inextricably linked to the troubling history of research conducted on African Americans without their consent, and many people—particularly African Americans—are hungry to learn Henrietta’s story and how it fits into that history.

        For decades, the story of Henrietta Lacks and the HeLa cells has been held up as “another Tuskegee,” the story of a racist white scientist who realized a black woman’s cells were valuable, stole them from her, then got rich selling them—perhaps even withholding treatment for her cancer in order to be sure the cells would grow. But none of that is true. Henrietta got the standard cervical cancer treatment for the day, and no one knew her cells would be valuable. George Gey gave them away for free and never profited directly from them (they were later used commercially by others). In 1951 when Henrietta showed up at Hopkins, taking tissue samples from patients without consent had been standard practice for decades. Henrietta’s cells were taken as part of a study on cervical cancer for which researchers were taking samples from any woman who walked into Hopkins with cervical cancer, regardless of race. Henrietta wasn’t targeted because her cells were known to be valuable, or because they were trying to grow cells from a black person. Gey didn’t even know she was black until after the cells grew.

        That said, race did play an important role in the story: During the Jim Crow era, Hopkins was a segregated charity hospital—patients in the “public” ward where Henrietta was treated were there because they were either black or poor (often both). They couldn’t get treated elsewhere. And the prevailing attitude then was that since “charity cases” were treated for free, doctors were entitled to use them in research, whether the patients realized it or not. Henrietta’s doctor once wrote, “Hopkins, with its large indigent black population, had no dearth of clinical material.” That attitude was widespread at the time.

        But this story is just as much about issues of class and economic injustice. Many people have asked me, “Would those cells have been taken from her if she’d been white?” The answer is yes, if she’d been white and poor. Many of the difficulties Henrietta’s family faced came down to issues of class: their lack of access to education; their inability to afford health care despite the fact that their mother’s cells helped lead to so many important medical advances. The Lacks family often says, “If our mother was so important to medicine, why can’t we get health insurance?” That question gets at the heart of what many readers find most upsetting about the Lacks family’s story.

        It looks like her next book will be about the human-animal bond: http://rebeccaskloot.com/2011/10/new-skloot-book-announcement/.

        Rebecca discusses the cells in detail in her FAQ, here: http://rebeccaskloot.com/faq/#questions-science.

        Thanks for your kind note, and good luck to you and your family.

        • scatterbrain says:

          Hi Renee,

          Thanks for your reply, the book had particular resonance with me as my mother died of cancer several years ago. I’m afraid the arrogance and patronising attitude of some doctors lives on. My mother had been complaining of severe pain in her spine for two years and it became so severe that she was unable to leave her bed—-her doctor insisted all that time that it was “just arthritis” and she should “get a life”.

          Finally she was given scans (which the family had to pay for privately as the doctor refused to approve funding through the British National health Service) that showed the pain was caused by 2 huge tumours in her spine and it was secondary bone cancer (stage4 cancer)–she died a few weeks later—the primary cancer site/tumour was never found.

          Although I am fully aware that by the time she began to have pain in her spine, the cancer had already spread/metasized and so was already terminal, we would have preferred to have known this and had more time to prepare, also my mother would have been given stronger pain medication to allow her to be more comfortable in the time she had remaining.

          So much for progress and learning!

          best wishes,

          Scatterbrain

          • Renee says:

            Dear Scatterbrain –

            I am so sorry to hear of your mother’s tremendous suffering, so tragic that it couldn’t be prevented. I’m glad to hear the book brought you some comfort. I wish you all the best.

            Renee

    26. Marti L. Foster says:

      This story has taken my emotions on the roller coaster ride of my life. I was absolutely exhausted when I finally finished the book. Like an earlier commenter I too put the book down, walked away, picked the book back up and read some more. I did this several times. There is a part of me that wants to thank Rebecca Skloot from the bottom of my heart for writing this story. There’s another part of me that is so angry with her I want to scream. The members of this family are still at a disadvantage in that they have to now apply for grants from Ms. Rebecca in order to get financial assistance. There isn’t even a family member on the Henrietta Lacks Foundation board, how can this be? How dare you Ms. Skloot. How dare you continue to make money from the sale of this book, speaking engagements, an HBO movie and more things to come and dole out a few thousand here and there for dental appointments, community college tuition and the like. Where is the NAACP lawyers and consultants. This family still needs assistance.

      NOTE IN RESPONSE TO COMMENTER: No Lacks family member can serve on the Henrietta Lacks Foundation board of directors because the foundation is a 501c3 tax exempt charity, and the federal government does not allow people who stand to benefit financially from the foundation’s grants to serve on the board that grants those funds. It is a conflict of interest that would cause the foundation to be stripped of its tax free charity status. The foundation has done and continues to do extensive work to help the Lacks family and others in similar situations. For more information on how the Lacks family has benefited from the publication of the book, visit the Frequently Asked Questions page of this website.

    27. Elena TaJo says:

      I found it so emotionally challenging to read that I wrote an essay about it for my website about outsiders: http://www.ogrehome.com/conversation/reading-henrietta-lacks

      Here is the beginning:

      The Immortal Life of Henrietta Lacks might be the saddest book I’ve ever read. If you don’t know this story, here’s the bottom line: A Black woman’s cancer cells were taken and cultured without her permission and, because of their superhuman ability to thrive, spawned all variety of discovery and cure. She died, her disease almost neglected; her family remains dirt poor and deeply uneducated. In the absence of information from the scientists who benefited from Henrietta’s cells, the family creates stories of heroism or victimization, depending on what’s going on that day. What is usually going on is a fight for survival against overwhelming odds. I thought I would fall over when I read how Henrietta’s daughter, Deborah, was plowing forward to go back to school and give an important speech in the midst of calamitous crises like a son going to jail and her own serious illness, only to have the speech cancelled due to 9/11. The epilogue tells us about some small gains in the younger generation along with defeat after defeat.

      This was not one of those books I couldn’t put down. I put it down over and over again. Getting a snack, reading the paper, fixing my hair, all seemed more attractive than stepping into this immense helplessness. I cannot fathom the patience and capacity exhibited by this young author, Rebecca Skloot. …..(click on the above link for the rest)

    28. Orah Blank says:

      Thank you for this heartwarming, bioethical, medical, legal look at an the tissue issue of today. Where will it go from here? How interesting the 2 edged sword of the HeLa cells, their contaminating and healing power of this immortal cell. I couldn’t put this book down til I finished it! Are you interested in other medical/ethical issues? Orah

    29. Elizabeth says:

      I finally finished the book as I started it right around the holidays. I was saddened and shocked but realize that the medical field has always been selfish and, unfortunately, heartless when wanting to further their ideas of “advancing science.” Blacks, whites, disabled people, and just unknowing victims have always been used to do be guinea pigs for doctors , governments and scientists. Think of the “downwinders” in Arizona and New Mexico who unknowingly watch as atomic bombs were ignited and later became cancer victims because of it. I know science has been advanced because of it, but, hopefully, in more recent years people aren’t unknowingly hurt or abused for science’s sake.
      I laughed, cried and pondered so many things after reading this book as it took you into people’s very personal circumstances. It makes you wonder what each of us are doing individually to make this world a better place. Thank you so much for this book. It will help many people appreciate Henrietta Lacks and pay closer attention to their own contributions in life, and be more aware of science in general.

    30. Nathalie says:

      Thank you for writing such a fact finding & thought provoking book. I could not put it down.

      I cried reading how much pain Henrietta endured. I had to stop and take a moment to hug my son when you uncovered the truth about how her daughter, Elise, suffered.

      I want to hug & thank Henrietta. In 1998, I had a cervical LEAP biopsy at the age of 28. They had found pre-cancerous cells. Because of her, I went on to live a healthy life & eventually give birth to my son. Words can never convey my unbelievable gratitude for millions of people like myself who have benefitted from Henrietta’s cells.

      Thank you Rebecca for bringing us this story.

    31. Julie says:

      I have recently read the “Immortal” book and found it fascinating, disturbing and morally challenging. This book opened my eyes and also opened the doors to a number of questions that I promply tried to answer by searching the internet.

      A couple of questions being…1) was Day ever tested for HPV? If Henrietta carried multiple copies of HPV-18 (or whichever one it was), I would assume that Day was the person who transmitted it to her. I gathered this from a few passages in the book that she had been treated for various STDs and she didn’t appear to be promiscuous; and 2) Is HPV transmittable to unborn children and did any of her children have HPV?

      The book alluded to family information that Rebecca wouldn’t be allowed to print and perhaps that where my answers are?!

      Thank you Rebecca for writing this important book. I am telling everyone I can about it.

      I realize these are personal questions but I am trying to understand how she could have multiple copies of HPV present.

    32. anon says:

      Being someone who received the polio vaccine, I had to wonder if part-of Henrietta Lacks’s immortal cell-line, is physically a part-of me? I devoured the book, and that concept did not seem to be covered.
      One other idea that was not resolved, is a solution to the question, “How to prevent theft of biological personal property, or being used in medical research without consent?”. At the risk of being denied medical attention and assistance, I have written-in on patient consent forms the following words to protect myself, (and biological property): “only to be used/taken for patient’s(my) benefit.” I have never been denied medical assistance because of this and I am enrolled in a research study, but it is with my consent, and any use or taking of my information or substance is primarily for my benefit. Yes the information is shared as part of the study, but nothing is taken from me without my permission unless it is primarily to benefit my health, not research.
      Thank-you Rebecca, for the way you told this story. I will never forget the beautiful family that you introduced to us.

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