Anita MacDonald
@macdonj
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All tweets discuss low protein foods to help children on low protein diets. All views are my own.
Joined April 2013
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Pinned Tweet
Notice for our families with PKU attending Birmingham Children's Hospital. Extra event dates added already.
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My head tells me it is a TV programme but my heart is still broken. So emotional. What a programme
#callthemidwife
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Heard the very sad news today that Dr Phyllis Acosta from the USA died at the age of 84 years. Phyllis was the first PhD metabolic dietitian. She developed many specialist formula & developed several dietetic management protocols. She changed world practice. One magnificent lady
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Congratulations to Dr Anne Daly who was awarded her PhD today from Birmingham University. Such a well deserved achievement after many years of hard work! We are all so delighted for Anne.
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I am so sorry that the NHS is not funding Kuvan for people with PKU due to cost. We all need a huge hug to keep us going but we have to succeed - persistance will win through! My retirement slippers will just have to stay in their box for now!
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Today is the birthday of both Prof Horst Bickel and Robert Guthrie and why we celebrate International PKU Day on the 28th June. We have lots of work to do make the life of every patient with PKU better. Today is the time to reflect on the past, the present and the future!
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Egoo Phe Home System for monitoring blood Phe levels: manufacturers website suggest it will be ready to go on sale in 2021.
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Anne will be submitting PhD thesis in 6 days times and final checks are being made to the content. The University said they wanted a 'sizable' thesis - well it is gigantic! They did ask! Very well done Anne - very impressive work. Role on submission day.
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Three years ago today I tried to retire but how can I? There is still so much left to do and achieve to ensure we have better treatments for PKU. I promised my patients that I would not go until we had alternative treatments to diet - so my slippers have to remain in their box!
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On rare disease day, it is always important to remember the contribution of Sheila Jones - she showed for the first time how dietary treatment benefited children with PKU
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22
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Tonight I was able to give one little with PKU an extra 0.5g/day protein as she had such wonderful phe control. Her reaction was amazing - you'd have thought I had given her a million dollars. Any extra protein added to the daily phe allowance is so precious to children with PKU
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Coming soon - our new app for PKU. Studies will start in 3 weeks time to check its effectiveness.
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Today I have worked for the NHS for 40 years (+ 5 years training). No time to reflect. We must keep moving forwards - there is far too much that remains to be done to improve the treatments that can offer to our patients.
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5
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I am so disappointed with the NICE draft guidance that children with PKU can have Kuvan until their 18th birthday and then it must stop. Since 1993, the UK have recommended treatment for life in PKU! This is echoed globally! We must honour this UK recommendation
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22
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Now this was quite a moment. The first time 'ever' I have been able to give a child with a PKU a regular chocolate Easter Egg! Stan has been on sapropterin for 2 years and he is now on a completely normal diet
@jess_brown10
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One young lady did her own blood spots this morning - so proud of you Isabelle. One brave superstar!
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It was 1 year ago today that we were given the green light to use sapropterin for patients with PKU in England. We now have around 35% of our clinic who benefit from this drug and we are already working on the next drug therapy to help other patients with PKU.
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A truly wonderful international lady - Prof Maria Gizewska. She is working 24/7 in Poland to help children and their families with PKU from the Ukraine. Maria - we are so grateful to you.
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A 7 yr old child rang me today. Please can I have this Turkish Delight. I explained 1 bar is 0.5 exchange so she could have this as one part of her protein exchanges. Her excited response 'I am going to pray to God to say thank you.' These things mean so much to our children
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My Christmas wish for 2021 is that dietitians issue low protein food prescriptions. We have had a number of children running out of low protein food prior to Xmas. Dietitians have the expertise -please give us control! Our children should not have to go without.
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40 years today and still counting. Thank you to St John! One amazing man.
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With PKU in the past, treatment was stopped before the age of 18 years. At the time, experts thought they were doing the best by their patients but evidence proved this to be the wrong approach. We are going down the same path again with Kuvan - why have we not learnt lessons
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Breaking news: we are very privileged that Paula Lane, the fabulous actress who played baby Elaine's mummy in
@CallTheMidwife1
will be announcing all the prize wnners at the
@NSPKU
award ceremony for
#PKUDAY2021
. Elaine was the little girl with PKU.
@lane_paula
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I have many wishes for people with PKU in 2021 but above all, lets get Kuvan sorted. Although we will never give up campaigning, its is so upsetting that the PKU community have had to wait, and wait and wait. Bring Kuvan 'home' in 2021- people with PKU matter!
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Jack will be one of our first young people to have a sapropterin loading test - 16 years after our first sapropterin trials. The road to sapropterin has been long and windy - finally it is time to move forward - lets embrace the new therapies for PKU
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Having access to food should be a basic right. To take away treatment at the age of 18 years which will severely restrict food intake is unthinkable at any level. We need to ensure people with PKU have the same access to treatment as children.
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An excellent poster on the impact of fruit and vegetable vs milk protein on blood Phe levels in PKU by Alex Pinto. A randomised controlled trial - you cannot get much better than this.
#BIMDG2022
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Today was the end of an era for this wonderful man (11th July, 1930 to 2nd September 2018). He worked until his final hours. He was the best dad - he was my dad! Will miss you and will always love you!
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The confusion of learning about dietary treatment in PKU. There were many challenges in 1966 but there still is today. It is one complex dietary treatment - as the daddy said - the dietitian cannot live with us.
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. The story of Sheila.
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Four years today I retired but long may those slippers stay in their box - there is too much work that needs to be done!
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A very helpful poster about PKU, produced by medical student, Cameron, with PKU. Thank you Cameron.
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21
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This lovely surprise arrived today from the
@NSPKU
. They are gorgous and smell lovely. Thank you. It is always a pleasure to help campaign for all people with PKU- they hold a big place in my heart. People with PKU have much to contend with. They deserve the best care possible!
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Well Anne's PHD was finally submitted 24 hours ago - in the end an anti-climax - a PDF file via a computer instead of a massive textbook - but nevertheless an enormous achievement. As for supervisor me- 1 PhD down and another 4 to go - and just maybe the slippers can come out
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The power of dietary treatment for people with PKU - but surely its time now to use other treatments alongside it to help control blood Phe levels and improve quality of life. We have waited along time!
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Who remembers these low protein wafers? It would be wonderful to have these or something similar available again in the UK
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My dad may not be with us anymore but what a legacy he has left in his garden - his flowers have never been so beautiful! Every year he grew sweet peas just for me!
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It is important to remember that only 25-30% of people with PKU will respond to sapropterin. For some patients and families, this drug will bring great joy but for non-responsive people, it will bring huge disappointment. We will be there to support whatever the outcome.
This is the sapropterin that is being prescribed by the NHS instead of Kuvan.
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The first UK guidelines for PKU were published in 1963. The medics were very concerned about the reliability of the ferric chloride test (a phenistick was applied to a wet nappy) that was used to detect PKU. It was associated with false positive and false positive results.
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Back to the church today were we married 40 years ago - it had changed very little unlike both of us!
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Right now I have many babies with PKU and I need a low protein rusk. Guess what appeared on my desk for me to try from one kind manufacturer - thank you
@ProminMetabolic
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Well our first 'face to face' event after a 18 month break is finally here! It may be a little different but it is the first step in the right direction. A busy 24 hours but it is worth it!
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Congratulations to Maria Ines Gama. Today she was awarded her Masters degree with distinction. Maria has done a wonderful job collecting data on sapropterin use in children with PKU. Her hard work and overall excellent performance were celebrated today! From one proud supervisor
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So pleased for everyone with PKU today - a long time waiting but so glad the moment has finally come!
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Very sad news about her Majesty the Queen who has given extraordinary service to our country. She was one amazing and dignified lady who has always been there for all of us. We will miss her. Thank you Your Majesty.
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Our IMD/PKU dietetic students: Maria (Masters student), Ozlem (PhD student), Alex (PhD student), and Sharon (PhD student)
#NSPKU2022
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Oh what a night! Just some of my many helpers with yesterdays 'unveiling of the Sheila Jones plaque' held late afternoon at the Children's hospital. I cannot thank this group of people (Ann, Natalia, Fatma, Maria, Alex, Anne and Cameron) enough for their help.
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I think it is time to share this beautiful plaque of Sheila Jones in situ at Birmingham Children's Hospital. Thank you
@ESPKU
. It is now 70 years since Sheila started her dietary treatment
#ESPKU2021
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The start of dietary treatment for PKU began 70 years ago in Nov when Sheila was first given a low Phe hydrolysate mixture (protein substitute) and very low Phe diet at Birmingham Children's Hospital
#PKUDay2022
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This potato contains 4 PKU exchanges. It could be the daily allowance of someone with PKU. Imagine being 18y old, and being told that this is your daily protein allowance from now on - after years of a relaxed diet with Kuvan! It is unthinkable.
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Back in the 1960's in PKU there was a 2 tier system for counting fruit and vegetables. They had 50 mg and 20 mg phenylalanine exchanges. Almost all fruit and vegetables had to be calculated in the diet. Just look at the examples: 2 inches of cucumber was 20 mg phenylalanine.
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Today finding a suitable place for a plaque, to commemorate Sheila who was treated for PKU 70 years ago. Hopefully we will be holding a special event later this year. Thank you to Fiona, our medical director, Prof Anne Green,
@official_espku
and
@hagedorn_tobias
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Today Ozlem told me more about the terrible tragedy in Turkey and how it is affecting everyone. There are not enough words to express our sorrow - but our heart is with each and every one of the Turkish community
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Very sad to hear Jean Koch had died aged 100y in April of this year. Jean was married to Dr Richard Koch (one amazing PKU doctor). Jean wrote the book about Robert Guthrie and his work with PKU. Jean's own life story is fascinating and she was one incredible and very brave lady!
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International PKU Day 2021. This year there will be a day of events on the 27th June. The colour green will be important on this day - watch this space and more will be revealed!
#InternationalPKUday2021
. Get ready, get set, lets go!
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Thank you so much to
@ProminMetabolic
for donating a truck load of low protein foods for our friends with PKU in Turkey. Thank you to Anne Daly
@AnnePaddy10
, the charity Global Hands, Turkish airlines and Turkish Consulate. Working together in partnership will always win through
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PKU Bite diet app will be available and downloadable from the apple/google app stores early December
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Thank you to all the special food manufacturers who are working extra hard to ensure there are plenty of low protein food supplies for everyone. This is particularly appreciated.
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A huge congratulations to Sharon who became Dr Evan's this week for a superb and huge PhD thesis. We now have now 3 dietitians with a PhD in our small team. Hopefully next to gain this title will be Alex! Everyone works so hard and I could not be more proud!
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Have you down loaded PKU Bite onto your mobile phone? So far there has been >800 downloads. Available free to download from Google Play or App store
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Today we celebrate international PKU Day. We have so much to be thankful for but we still have along way to go.
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Thank you Tom, Anne and Georgina for this pallet load of
@Promin
low protein foods, on route to Turkey via Birmingham Airport. We and all the patients with PKU devastated by the earthquakes appreciate your help and generosity so much
@AnnePaddy10
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Congratulations Alex Pinto. Today he received an email from the SSIEM to say that his abstract for a poster had been nominated as one of the top 10 posters and as a consequence will give a presentation in the new 'scientific theatre' at the forthcoming SSIEM meeting.
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Wonderful, heartfelt speech from
@IanAustinMP
for PKU and other rare conditions in Parliament. Thank you so much.
1
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39
Bryan Pearce who remained untreated for PKU was an incredible artist. Local craft shops in St Ives sold his pictures. Every time they sold a picture, he would buy a new train for his train set.
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History and PKU. The recommendations for the duration of treatment have changed throughout the years. However, we had a clear recommendation from an expert 1993 UK MRC working group on PKU that treatment should be for life
@MetabolicsBCH
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This was the first low phenylalanine diet plan with protein substitute used for PKU in 1951 in Birmingham. The low phenylalanine protein substitute was made in large jars in the laboratory at the hospital. The mummy of our first treated child collected the heavy jars weekly.
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37
Aptatek BioSciences is a USA company working on a
home blood phenylalanine monitoring device, which will send results through to the mobile. The company are doing patient studies this year and we awaiting to hear more news.
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39
Now this is a PKU legend. Christine Clothier, dietitian from Liverpool started working in PKU in the 1960's and helped shape the PKU diet as we know it today. She introduced an exchange free system for some of the fruits and vegetables. She was also my PKU tutor!
1
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39
Today, the
@NSPKU
had 2 hours of discussions with NHS England, Skipton House London.
#Kuvan10yearswaiting
. The NSPKU will not give up their mission to have sapropterin available for patients with PKU.
@PKUFamily
@Carolin93205471
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The fruit and veg study in PKU is completed. Alex Pinto is doing the final analysis and will go for publication as soon as possible. The first people to hear preliminary results in an online meeting in Feb will be the wonderful children and families who took part in this trial.
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My goodness - did not realise until today that Birds custard powder was formulated in 1837 in the chemist shop of Alfred Bird for his wife who had egg allergy! This all happened in Birmingham - and of course -is suitable for low protein diets
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Just finished preparing the final nutrition PKU guideline for the next European PKU Guidelines - what a marathon! Next stage - is seeking agreement from another 20 health professionals. Still along way to go but stage 1 is over!
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Congratulations to Georgie Wood
@georgiewood28
. Her first peer reviewed paper published today on UK special low protein foods and their nutrient composition
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39
How I love working with this group of women! United in our determination to support people with PKU
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Today on my way to Madrid to discuss the new PKU Guidelines. Unfortunately - I will only get as far as an airport hotel in Madrid - so will not see the beautiful centre
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37
Download the new PKU bite from Google Play or iPhone App Store
2
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39
We finally made it to Jerusalem for the SSIEM 2023. It took 3 days, 1 cancelled flight, 3 delayed flights, 1 missed connection, 1 unplanned overnight stay, another almost missed connection and little sleep. Was it worth it for 24 hours at a conference? It certainly was!
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Today we had the virtual spring meeting of the ESPKU meeting. Bernadette Gilroy speaking passionately about the importance of care pathways and joint collaborative working between patient's and professionals
@sheehangilroy
. Great session Bernadette
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39
Prof Jerry Vockley talked about the Aptatek home blood Phe monitor today. He will start trials soon to investigate if the blood phe monitor will help improve adherence. Apparently this monitor will not give a precise blood phe if levels below 200. It just states under 200.
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36
Alex has completed 100+ miles running for the
@NSPKU
challenge '100 Your way' during June
#PKUDAY2021
. Well done Alex!
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38
Another new medication for PKU discussed at SSIEM 2023. JNT-517 (Jnana Therapeutics). Given by mouth.
Aims to help the body get rid of excess Phe by
blocking Phe reabsorption from the kidney back into the blood Increasing excretion of Phe in the urine
0
9
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