How did you feel when you were first diagnosed with SCD? What advice would you give to someone recently diagnosed with SCD?

Welcome to the first day of questions on Living with Sickle Cell Disease! We're excited to see your responses and have you interact in the community!

The first question asks how you felt when you were first diagnosed with SCD? If you could speak to someone who was recently diagnosed, what advice would you tell them?

What do you wish someone told you when you were first diagnosed?

Share your experiences and interact with other members in the comments below! :)

9 Replies

  • I was diagnosed when I was 19. I had pain episodes as a little girl, but no one knew what the problem was. In my early teens, the doctors said I had rheumatoid arthritis. Just before I had a baby, the drs finally diagnosed me with sickle cell disease. I didn't have a clue as to what that meant.

    I feel the key is to find a good doctor. I had the best and he really taught me a lot about the disease. Also, educate yourself and others as much as you can. I attend conferences and do a lot of reading about sickle cell. Another key, (as a doctor told me), don't try to be a hero. If the pain is really bad, go to the ER and don't let it get out of control - avoid a hospital stay.

  • I was diagnosed at 11 days old so I have no idea how I felt.

    If I could offer my advice to someone I would tell them that it is manageable disease, it doesn't feel that way in the beginning well it didn't to me but you have to understand your body, a good doctor is ideal but remember you are the expert on your own body trust in your instincts.

    That's what I wish someone had told to learn my own body to understand what my triggers are and that changing my lifestyle and attitude can change my health.

  • I was first diagnosed with SCD at 18 months so I can't really tell how I felt like. It was a surprise for my parents. They found out then that they both had SCT as well as one of my siblings. Life expectancy for me was about 6 years old. It was a difficult childhood living in Angola until I was 6 with such a hot and humid weather. Then we moved to Portugal and things improved slightly. Teenage years were very difficult as with SCD you are not a "normal" person and it was hard to juggle missing classes a lot, being a successful student and integrating socially. Until around 30, many hospital admissions, some blood transfusions, constant care and getting to know yourself to be able to better manage the disease.

    Hydroxycarbamide changed my life and allow for stability at last.

    What advice would I give to someone recently diagnosed with SCD? Accept what you have, learn as much as you can about the disease according to your age group (and share it with others who may know less than you), pay attention to your own body. Don't be a superhero but you are as good as anyone else so never give up. You have to know your own limitations but trying responsibily is part of the learning curve. You can do most of the things as long as you are aware of when to stop. Sometimes you will be defeated and a crisis will be right around the corner but you will learn to recognize the warning signs.

    A good relationship with your doctor and the healthcare personnel is essential. Be humble but fight for your rights. The disease has a different manifestation according to each individual therefore it's a partnership and they need your help to understand you and be able to help you. Taking the medication, not missing the appointments, doing the examinations, asking about anything you may not understand, alerting to anything unusual, keeping a record of the vaccinations, what you already did, what you have scheduled and need to do is essential. You are your own guardian.

    Family and friends are of the utmost importance. They are your support network. If they don't understand and accept you as you are they are not really your friends. Try to keep positive and ask for help when you are feeling down. The psychological side of it is very important. Don't be ashamed to ask for help. Don't ever hide that you have SCD. I have always been a successful student, never missed a single year, I have always worked and am married but decided not to have children, was always very open with my employers about the limitations of the disease namely about travelling (yes it's possible but it has to be carefully planned), and many times chose the safer option, the best for my health and not necessarily what I liked the most.

    We are warriors. Let's keep up the spirit and help others to help ourselves!

  • I was diagnosed since birth so I do not know how I felt, I think as weird as it may sound I came to terms with my health when i was an adolescent, I knew it could get bad as I would be the girl in school who wasn't allowed out when it was raining and I always had a thicker coat than others, there was just certain things i couldn't do in school because of sickle cell, but as a teenager is when I started to have to deal with things alone as in appointments and discussing my pain.

  • I was 10 when I first had a crisis. The first lasting thing is hearing my mum being told I would not make it to my 17th birthday. What made a difference was my mum's reaction. Although she did not say anything to the doctor when I was discharged she educated me on and kept educating me.

    If I could tell anyone newly diagnosed i would say get informed about sickle cell and know how it affects you and how to live with it. Have a supportive network of friends, family and healthcare providers. Take ownership of your health by getting to know what you have, what you need and never give up.

  • Disbelief, though I had pains when I was younger and suffered severally from malaria, I also knew I couldn't play football much as I experienced back pain afterwards. I however grew beyond this and lived a very active life during my University days but above all reality did set in as I experienced episodes of sickle cell crisis. Luckily my GP who diagnosed me referred me to a Haematologist consultant which I still attend to date. As an SC I take my diagnosis very positive and as a way of life. Personal management of my health condition is the best way forward and antidote. Through it all I remain greatful to God my redeemer, healer and sanctifier.

  • I was diagnosed from the age of 3 years, I was too young to know how I felt. My parents felt and told me this illness will not beat you. Since the age of 6 years I had my spleen removed, I haven’t suffered a sickle crisis in 28 years. I thank God! I have been fortunate enough to be able to self-medicate when I feel overly tired or feel that my body is aching in certain places. I try to drink as much water as possible and I am so afraid of the cold I am always wrapped up. Having a good network of family and friend who understand and support you as an individual as well as your condition, is very important. Do not be afraid to say no, not today! Your body and mind can only do so much! So understanding your body is key, being able to have painkillers with you at all times to eliminate the pain before it becomes unbearable. When it comes to the health professions eg: GP’s and hospitals, you have to be the expert, having a excellent GP is good but unfortunately you will come across those who don't have a clue and you have to tell them! Knowledge is power and that doesn’t just stand for having Sickle Cell but with whatever profession you choose. You know what will help you get through the day/week/month, don’t be a martyr to the cause. Speak up! Your life your health.

    We are Sickle Warriors!

  • I was diagnosed when I was about 3 years old so I don't have any memories of how I felt. I guess I was ill, my parents knew about the diesease and they did everything the Dr said to make me feel better. Later on I felt angry. Angry that I missed a lot of school, angry that I felt so much pain, angry that I couldn't do sports and angry that I had many visits to hospitals for transfusions and adequate pain relief. My advice now to anyone diagnosed with SCD is to find a good haematologist in a hospital with a dedicated team that really understand the diesease. Join a pain management group to help with coping mechanisms during painful episodes or depression. Tell your family about the problems you are going through so they understand that you can't always do what they expect. Make time for yourself to rest and remember to keep hydrated and warm.

  • I was diagnosed at the age of 2, I think very small to know what it all meant. As an adult, and especially what I have been through, I would only try to imagine how my parents may have felt hearing I had sickle cell.

    What I would tell someone with sickle cell today is that they accept what they have, educate themselves and take care. Live a happy and positive life because sickle cell despite its challenges, is not a death sentence so we shouldn't let fear and unnecessary worries cheat us out of having a happy and fulfilled life.

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