'promosm' 😜

'Promosm' ❗

My two year old was diagnosed three months ago and this was comforting

Hello from Rebekah....cystinosis adult

ᎮᏒᎧᎷᎧᏕᎷ

I glad to see this. Hello from Eddie with Cystinosis age 43 👋

I was a patient diagnosed with Peripheral T cell NHL in the year 2014. Location of the infected lymph node was Right Groin, which enlarged to lower abdomen. Peripheral T cell NHL diagnosed after excision biopsy.. I got 7 Cycle CHOP and Radiotherapy.. In September 2020 a PET-CT Scan done after I notice sever itching problem. PET scan showed an 70x51x70mm sized Anterior Mediastinal Mass with SUV max 11.. Thoracic surgeon refused to operate the mass.. A core biopsy and histochemistry done. Which shows an Intermediate grade Diffuse large B cell Lymphoma. CD20, BCL6 & MUM1 are positive. BCL2, CD3, CD5 & CD10 Negative. Bone marrow aspiration suggesting "Reactive marrow with myeloid hyperplasia and excess of lymphocytes. Before all these diagnosis I only faced itching problem... First symptom noticed in beginning of August 2019. Last 24-26th October I suddenly faced swallowing face. An echocardiogram of the heart on 27th October showing small amount of fluid buildup around my heart. LDH lifted to 366. My oncologists immediately suggest chemotherapy.. The new chemo protocol is R-GCEOP.. 1st Cycle started on 27th October and spited into 3 days.. Rituximab, Cyclophosphamide, Gemcitabine, Etoposide, Vincristine, prednisone given. After 1st cycle chemo, face swallowing and itching removed significantly. We took part in a research project which involved a two day trip to Florida to the ALS Disease Centre, We had the opportunity to meet with Dr Odia, A highly recommended herbalist with scientific medicine. There is a lot to say about Dr Odia. I began healing herbs from Dr Odia, MD, who specializes in internal and pulmonary herbal medicine at ( Dr Odia Herbalist Home on Facebook). I would encourage anyone to seek a second opinion especially if they’ve been told there’s no hope. It’s also crucial to learn as much as you can about your diagnosis. Seek options. Find out about what’s out there that could help. Contact Dr Odia via:( Dr Odia Herbalist Home on Facebook) or email: ([email protected] ). He has a cure for Encephalitis, Herpes and cancer.

Your voice is amazing..🌈 I dont have it but I'm sure you struck hope into people who do.

So...ALAB is Future by Design (which was started by Aimee Adelmann and Jen Loglisci in 2016 and terminated by CRN in 2017. ALAB is the re start of Fbd with another set of adults, some who formally were part of Fbd.)

This is the link for calculating your GFR mentioned in the podcast at ~ 17 minutes. www.kidney.org/professionals/KDOQI/gfr_calculatorPed

Hoping this film raises awareness.

love you son,miss you sooooo much

Love you brother! I know you're still here with us❤. You passed away 5/7/20 on Cystinosis Awareness Day. How strange and mysterious life is🙏🤷❤💯😞 I love and miss you always😭 Until we are together again, love, your sister Natasha💔💗💕💓💖💞💘💌

❤

Todd passed away May 7 2020. His greatest hope was to help anyone that needed it. Stay strong out there! If you knew him just know he misses you.

Dear God, I cried yet again at Cystinosis I love this family. I had my own son battle Cystinosis and lose over 40 yrs ago. Please support this family and send your love too

GreT Job!

I’m from Russia .i,m which cistinosis

Hello main friend !

Another great video bud.

Hello

thank you for everything Todd! n love ya too.

👍👍👍

У моего сына цистиноз!!!

Мы из России!!!

Привет

Thank you FbD!! I am looking forward to other episodes!!

I love this

hello everyone , my name is Hadi from Morocco I have a little brother who suffered from Cystinos since he was 3 years old after passing two operation of removing crystals from the right kidney (left one is not working and small) the doctors decided to give him Trolovol 300 (D-Pen I villa mine) but the problem is that this disease is not very known in our country and this tablets doesn't exist in Morocco and if we send the prescription to someone to bring it from Europe they can't have them easily and if yes they bring only one pack of 30 tablets it's not enough! please help this little boy his name is Youness and he is now 11 years old for more information please contact me via whatsapp or call me ( +212 611834814 ) thank you so much